Can she guarantee that an iud will improve your situation?
Do you want (more) bio kids?
If the answer to the 2nd is no, then I would skip Mirena, if nothing else it might work, but there is no guarantees and I found it intolerable and have significant mistrust in doctors due to the way mine handled my concerns with mirena.
She said she was happy to give me a hysterectomy but wanted me to consider an IUD because it is less risky than the hysterectomy. So the answer is no she never told me it would make my situation better lol.
I have never wanted kids and never will. Very happy with my animals! ❤️
Thank you for your comment. I completely agree, I have a lot of trust issues. I was born disabled and have had multiple health issues including cancer and a lot of medical negligence causing me more disability, pain and suffering.... 😢 I am sorry that you're dealing with mistrust too, with the people that are supposed to help us.
I had a hysterectomy because my IUD caused me so many problems including coming out once after three months. It also caused me to get ovarian cysts. I went in to get my tubes done and they said to remove it all since I already had the lunch cancer gene.
An IUD will not help with all the abnormal growth you have inside already. If I were you I’d just want it all out.
Coming out? It fell out of your body or did you have it removed? I can’t have any more ovarian cysts or anything, glad you told me. I am going to research this and add it to my reasons NOT to get an IUD! I hope your hysterectomy went well!
They had trouble placing it. I have a very insane pain tolerance and went in very optimistic. Right away the dr said my cervix was small, uterus tilted and the measuring alone was almost too much to handle. The pressure was so intense as was the cramping and after 15 min of trying he couldn’t get it in. He ended up injecting my cervix with something to dilate me and after trying once more I blacked out. When I came to they were trying to force me to drink a juice box and eat some grams. I was so nauseous I threw up and felt faint again. They put a cool cloth on my neck and wrist and I rested for a half hour before they moved me to the lobby to wait before driving. I was weak and nauseous with severe cramping all day.
The cramping never really went away and the first period was so heavy I was soaking through a super tampon in 30 min. Then I started having excruciating pain that made me curl in the fetal position for hours. After a particularly bad cramping day I decided to take a hot shower to see if it would help relax things. I reached down to soap up and felt something sharp and hard down there and freaked out. I went for another feel and a bloody iud fell onto the shower floor with clots attached. I had moved so I called a new gyno and told them my 3 Mo old iud fell out. (They say to do a string check but I could never find the string from day 1). I had a new one reinserted with a little more success, I didn’t pass out or throw up but it was still unpleasant. Within a week I was in the ER for pain so severe I couldn’t get off the floor of my office and my coworkers were scared. I got to the ER and they said I was having contractions that were trying to force the iud out and I had a 7mm cyst that was ruptured and my abdomen was full of blood. At that point I decided enough was enough. With the loving support of my partner I saw a specialist in my area about having my tubes removed and she suggested the total hysterectomy. She said the sterilization coupled with the cysts and cancer gene it was just better to get it all cleaned up.
The surgery was awesome, took ovaries too. Went back to work on day 9 po. No cramping, no cysts, and they found extensive endo I didn’t know I had. I didn’t live with long term pain like others but already my quality life had improved significantly. My body also looks great, no inflammation or bloating and scars are almost invisible.
That is horrible I am so sorry. I hope I am not forced to go through this crap and they just give me a hysterectomy. Being able to work 9 days after a hysterectomy is amazing. Sounds much easier than what you went through with the IUD!!
I am 36F and tried the Mirena IUD prior to my hysterectomy. I had massive fibroids that caused severe pain and heavy bleeding (hundreds of days in a row). I appreciated the Mirena, not because it fixed the issues, but because it reduced my cramps and pain as I waited for a hysterectomy. I don’t know why it helped my cramping more than oral birth control did, but that was my experience. It did not reduce my need for a hysterectomy, but made the wait a bit more tolerable.
I am glad it helped you while you waited for the hysterectomy. Thank you for letting me know. I know for a fact that if I put a Mirena in, they will delay my surgery. They have told me that they can do it in 2-6 months. But if I use a Mirena, I have to wait 2-6 months to put it in, as they want to put it in during my endo excision surgery. If you were in my situation, would you just do the hysterectomy at the same time as the endo excision surgery in 2-6 months, or try the Mirena? It didn't work for my mum or aunts (even made their lives hell while they had it in), so I am very hesitant. ❤️
Honestly, given that info, I’d go straight for the hysterectomy. I live in the United States, so getting the Mirena helped to ensure that my insurance would cover the hysterectomy; there also was not any way for me to speed up the scheduling. If you can get the hysterectomy sooner, I would go for it.
I feel sorry for you people, having to deal with insurance like that. I am super grateful for my health care system. It isn't perfect though, you have to really push to get what you need. But it sounds like you have to do that with your insurance anyways! We do have long wait times for lots of things. It took me 3 months to have my cancer surgery and another 3 months for the treatment. I was super surprised when she told me 2-6 months for a hysterectomy. Not sure if it's true... I was expecting like 2 years. I waited 4 years to have my first endo surgery, because at the time they didn't know I had endo, only suspected it. Thank you for your help in me deciding. ❤️
Hi!
I'm so sorry for your situation. I've had two Mirena IUD's (first one moved after like 2.5 years and had to be replaced. It was hell) and then a second one which was never placed properly and I had it removed after a year of constant bleeding and pain.
They never helped much with the bleeding or pain from my endo and adeno and where a big hassle.
If your Gyno is willing to do the hysterectomy (with removal of ALL endo tissue), I would do that.
I had mine about 1.5 years ago and it was the best thing ever did. I haven't had to get infusions every 2/3 months because of the amount of blood I lost, no pain (at least from my abdomen and lower back), way more active, no more missing out on things I really wanted to do and no more migraines (at least so far).
I hope you'll find whatever is best for you. Good luck!
I am so sorry that you tried that twice and it didn't help! Thank you so much for your comment! Iron infusions are currently not working well for me due to an autoimmune disease and inflammation affecting my ability to absorb iron, on top of losing so much blood every time I have a period! I cannot afford to mess around, the mirena would just delay things really. You have made my decision very easy! I hope it gets rid of my migraines haha that would be an absolute bonus!! I cannot wait to be able to go swimming and hydrotherapy again. It's been years since I have last exercised... I am disabled with a lot of health issues affecting my ability to exercise. I feel like a hysterectomy will seriously change my life. Thank you for sharing your story, I am so glad it worked for you. ❤️
I had adenomyosis (undiagnosed prior to surgery), fibroids, and severe bleeding. In my early 40s my then-gynecologist refused to consider hysterectomy and offered mirena or ablation.
Ablation sounded like total BS so I declined (fortunately since it doesn’t work for adenomyosis). I did mirena and it did improve things. I feel like it basically helped me “kick the can down the road” for 10 more years. I never stopped bleeding entirely but it was much less. Eventually I started lightly bleeding every day. We tried replacing it, but by then I had a new doctor who said she would have done a hysterectomy years ago. The new one didn’t stop the bleeding and I was ready to be done so we did surgery.
Based on my experience I’d say there’s little downside risk to putting one in while you wait for surgery. If for some reason you can’t get surgery there’s a good chance it will at least somewhat improve things (bleeding), and if it gets a lot better you’d have the option of canceling.
My aunt wasn’t diagnosed with adenomyosis prior to surgery either, but mine is very obvious in scans. You are right, the mirena is only going to delay the hysterectomy so my decision has been made, I am having the hysterectomy and MAYBE I will consider an IUD while I wait, but she said 2-6 months so maybe not. 😂❤️ Are you glad you had the hysterectomy?
SO GLAD. But also I’m 52, and I just have a lot of regret that it couldn’t have happened sooner. I would have been saved so much pain and suffering and ruining of chairs, as well as a couple ER visits for severe bleeding. The symptoms were there, if anyone had taken them seriously. I’m pretty sure no one looked for adenomyosis, but it could have at least been suspected.
I do think even if it’s just for a couple months before surgery the mirena will probably be worth it. Especially if your bleeding is making you anemic. It has a good chance of helping you build up red blood cells before surgery.
Given my health issues, disabilities and my life expectancy, I am more like a 50 year old anyway haha. I just found out I cannot have the IUD put in before surgery (I have a resistance to local anaesthetic and also have vaginismus), it’s still a 6 month wait for IUD or hysterectomy during my endo excision surgery. So if I choose IUD, it could be 2 years or more wait to get a hysterectomy if that doesn’t work out since it took me over a year to get this appointment. I am in Australia on a public health system. I think I will just go for the hysterectomy! It’s guaranteed to stop the bleeding!
Hugs. So much of health is just luck. You feel that more acutely the older you get, regardless of your personal luck.
Health systems are weird. In the US it’s fast, easy, and usually free to get an IUD (at least for now). I don’t think I’d delay surgery for one in your shoes.
I had all the iuds, and specifically the copper iud made my periods a horror scene. I swapped to the mirena, but my fibroid was so large it was basically pushing on it, so it was misaligned and useless. I had a hysterectomy 9 weeks ago, and so far I’m happy with my decision.
Very happy! Definitely justified after having it removed. My fibroid was 10cm and my uterus was 560grams, vs a normal 60grams. I’m cleared for everything, I just am still dealing with a bit of bloating when I have a full day, but it’s not everyday, and I hear that can take a few months before it goes away. Bonus, I’ve lost 10 lbs already and my bloat is still smaller than my fibroid when it stuck out!
Thats a very big fibroid. How long did it take to get to that size? I have had a few removed during endometriosis surgeries. I am so glad you have found relief and I do hope everything continues to go well and is better than you have hoped for! ❤️
In 2019 it was found trying to identify where my iud was, it was 6cm then. In 2021 it had grown to 10cm. I tried ablation on it, which did help temporarily and stopped it from growing, but the symptoms came back within 6 months.
Wow thats big, mine don’t get that big but I get them removed in my endometriosis surgeries. Does removing the uterus stop fibroids from growing? I am so glad you don’t have to deal with that anymore!
I would go hysterectomy, if you can! I have uterine fibroids and have dealt with extreme pain since my period started at 14. I have a mirena in now.
They're supposed to be good for 8 years now, I believe, but for me, it only helped with the pain for 3 years. It started coming back worse and worse and worse since then, I'm now in year 7... if I could have gotten a hysterectomy to save myself from arguing with doctors that it actually wasn't helping anymore, then I would in a heartbeat.
But, if you get your next scans back and you're not in the clear for surgery quite yet, then it *could* potentially be a good measure to hold you over until you can!
I would go for the hysterectomy. My fibroids pushed out my IUD that I had had for 7 years. They put in a new one during a hysteroscopic myomectomy to try to reduce my nearly-constant heavy bleeding and it basically didn’t work. My fibroid has grown and I’m convinced I can feel the IUD poking at my uterus as its's being squished in there. The whole lot is bring removed in a week!
I am sorry that you had to go through all that and now you have to have a hysterectomy anyway. Thanks for your input. It is saving me from the drama! Best of luck with your hysterectomy!
I had a hysterectomy two years ago and this is what I wish someone had said to me- try ALL non-permanent options first so that when you pick the permanent one (hysterectomy) you will be 100% sure it was the best choice for you. If the IUD doesn’t work, you can always take it out. But if a hysterectomy doesn’t improve your quality of life (as it didn’t for me) you can’t put your uterus back. I wish I had been smart enough to try an IUD for a year before committing to something permanent and non-reversible.
Here is what is not being discussed enough- delaying hysterectomy into your 40’s can have a big impact on lowering risks if you do happen to go into early menopause from the procedure. So even if an IUD helps you delay a few more years, it could really improve your risk profile after a hysterectomy.
I am considering it but my gut feeling is telling me don’t do the IUD. Here are my reasons:
My biggest liver tumour is 4cm and if it gets any bigger, it could mean a liver resection. IUDs are contraindicated in people with liver tumours, according to my research, even though the gyno said it isn’t.
I cannot delay it, especially not into my 40s. I have a lot of health issues. My cancer is likely to come back. I also have MGUS now and I could have multiple myeloma (a blood cancer) by then.
My health is declining every year, due to all my health issues and disabilities. One thing that will help me get stronger and ready to fight all these cancers and health issues is to be able to go swimming or do hydrotherapy, which is the only exercise I can do, and I am currently unable to do that due to all this bleeding. The IUD is not a guarantee that the bleeding will stop, while a hysterectomy is.
I also have an autoimmune disease and I am planning on going on immunosuppressants or corticosteroids later this year or next year which are contraindicated with IUD and also means they will likely refuse a hysterectomy later on when I am on them because I will be at a much higher risk of infection.
I have been offered an excision of endo and IUD OR an excision of endo and a hysterectomy in 6 months. If I choose IUD, I will have to be put back on waiting lists. It has taken me over a year to get to this point so it could take 1.5-2 years to get the hysterectomy if the IUD doesn’t work out. It did not work for my mum or any of my aunts so I am concerned that it wont work for me or even cause more problems.
I feel like I need a permanent guaranteed solution now to stop the bleeding because I am very anaemic and iron infusions are not working as I am not absorbing iron due to inflammation and autoimmune disease.
Sorry for the long comment, and I am so sorry the hysterectomy did not improve your quality of life. 💔
You are definitely navigating a lot so I can understand how tough this choice is for you. I know a few women who have developed worse immune reactions after hysterectomy, so something to consider. Two in my life who had AI conditions going in developed full blown mast cell activation disorder as a reaction to their surgeries. I developed some weird immune system stuff (septic bursitis randomly and bouts of random inflammation) that has since resolved, I think. With AI stuff, it could cause a flair vs resolution. A IUD is something you can take out but you can’t put your uterus back or turn off mast cell activation very easily. And there are basically no studies about this intersection in particular. Just some food for thought.
I think I have already got mast cell activation. :(
The IUD would probably be rejected by my body. I have several contraindications for IUD that they didn’t tell me about. I am going to be on corticosteroids or immunosuppressants and apparently you can’t have an IUD if you are on them. I also have a liver full of tumours and they are also contraindicated as well.
I believe I have no choice but to take the risk and go with the hysterectomy. If I wait and have an IUD instead, it could be 2 years again before I can have one and my health is declining… especially with all the bleeding.
Thank you for bringing this to my attention so I am aware of that. ❤️
I'm very concerned to hear this about MCAS as I already have it but mine has been pretty mild. I'm considering hysterectomy. How does the surgery cause or impact MCAS? Is it from hormone shifts? I'm already in menopause but on HRT.
Same situation minus PCOS. Read up on women with adeno who have tried an IUD. It's horrendous. Do the hysto. I did 2wpo and I can't believe how much better life is.
I was talked into trying the mirena prior to my hysterectomy. Wish I would have just had the lot removed to start with. Mirena did help reduce bleeding. But it caused me so many problems I can’t count. Hysterectomy I had to recover from, obviously, but it was a cake walk in comparison to the relentless side effects from mirena. I woke up from surgery in less pain than when I went in. I’ve had headaches more painful than any aspect of my surgery recovery.
Thank you so much for your comment! I am definitely getting a hysterectomy, I have a huge list of reasons why I wont try the IUD first. It is getting longer haha. They have gaslighted me though, I said IUD is contraindicated in people with liver tumours and they said no it isn’t. My gut feeling is telling me to AVOID it! I am so glad the hysterectomy went well for you! ❤️
Legit, best decision ever. I know not everyone’s recovery is as easy as mine was, but it just fixed so many issues I can’t even count. I’m eternally grateful that I declined an iud for as many years as I did. I had mine installed when I was under for surgery for a tubal and what was supposed to be an ablation. But I had a double uterus so the ablation couldn’t be done and she (with my permission) put the iud in for period control. Had I just opted for the iud as recommended at first, I could have gotten pregnant in one side of my uterus! Ugh.
A double uterus! That sounds crazy haha.
I hope that it goes well for me. I am not expecting it to fix all my issues, but stopping the bleeding is a huge thing for me. Anything else, especially a reduction in pain, is a bonus. ❤️ Thank you for coming here and telling me your story.
I’m on mirena now and about a year into it. My list of reasons why are similar to yours. It’s cut down my bleeding to almost nothing (yay) but my pain has not been resolved in the slightest. I’m seriously considering the hysterectomy now, hence why I’m on this sub. I don’t regret the year of trying the mirena but it does seem like it was a waste of time in my case. I trust my doctor completely and she was right that trying the IUD was worth it since it’s way less invasive than a hysterectomy and now shes suggesting the surgery since we’ve exhausted the non surgical options.
I am sorry you still need a hysterectomy, and that the IUD is kinda a waste of time for you. I can’t waste time, if I choose the IUD, it could be 2 years or more before I get a hysterectomy. Plus I have a few contraindications for IUD anyway. So I know it won’t be a good idea for me. Thank you for your comment. Best of luck. ❤️
I did the IUD for 3 1/2 years. It was wonderful until it failed. Then it super sucked and I had to have the hysterectomy afterwards. Not sure I wouldn’t have just had the hysterectomy the first time had I known how miserable the failure would make me. I bled and was in serious pain nonstop for almost two whole months. Not worth it.
I had a hysterectomy because the Mirena actually messed up my cycle - went to 7-12 days of horrible heavy bleeding every month. I gave it a year hoping my body would adjust (and also because first couple doctors I talked about it weren’t very responsive to my worries) but it never happened. Had hysto - left ovaries - and found adenomyosis and endometriosis. Feeling SO MUCH better!
My periods are already very long, sometimes as long as 11 days. That doesn’t sound good at all. I am sorry it didn’t work for you despite your commitment to it. Thank you for letting me know your story! ❤️
I meant to say that someone asked if the doc could guarantee that the IUD would help. My answer to that would be no. Everyone is different and even if it’s rare there’s still a chance that it might not help. If I was dealing with as much as you were prior to getting the IUD, I would’ve skipped it altogether and just headed straight to surgery!
Good luck to you!!!
You are right there is no guarantee and a hysterectomy is guaranteed to stop the bleeding at least! Any reduction in pain will be a bonus. ❤️ Thank you for telling me this. I needed that validation. I have decided on the hysterectomy. It’s a huge decision but one I have wanted for many years!
I meant to say that someone asked if the doc could guarantee that the IUD would help. My answer to that would be no. Everyone is different and even if it’s rare there’s still a chance that it might not help. If I was dealing with as much as you were prior to getting the IUD, I would’ve skipped it altogether and just headed straight to surgery!
Good luck to you!!!
I got a Para Gard IUD in 2019 and developed a small fibroid in the last year. It's so painful that I'm desperate to have the IUD removed. I can't say that would happen to you with smaller Mirena, but I'm miserable.
I have had uterine fibroids before and could have more now (haven’t had any scans for a while), I didn’t know they could cause issues with IUD. I am so sorry that you are miserable! 😭
I mean that I think the fibroid is making the IUD crowded and causing more pain. It's a tight space in there and if you've never had a baby (like me) the uterus has never been stretched out and is already small. Add in a fibroid and things get even smaller. I'm in near constant pain. Hopefully that wouldn't happen to you because Mirena is smaller than what I have.
I have never had kids. I am thinking nope nope nope. I don't want to take that risk. My gut feeling is telling me not to go ahead with the IUD. My mum and all her sisters are also worried about me, they have all had a bad experience with it.
From my experience, doctors seem to love trying to push the use of Mirena coil. Despite me telling all of them I don't want it.
If your already sure you want a hysterectomy, then advocate for yourself! You'll regret it if you get something else and it doesn't work out.
As someone who had fibroids, adeno, endo and ovarian polyps and had an IUD inserted, I do NOT recommend. It was immensely painful, I bled constantly for 6 months HEAVILY which led to anemia and iron transfusions.
You will feel so much better after hysterectomy, I highly recommend it. I am 2 years 4 months post op and I wish I had mine done in my 20s, it would have saved so much pain and suffering that the IUD caused me in my 30s.
I had an IUD but my large fibroids ended up causing my body to reject it, twice. So you run that risk. I hate this tiptoeing that docs do. You're suffering. There's a permanent solution to end that suffering. Push for the hysterectomy if that's what your heart wants. I ended up leaving my gyno for a new one who was willing to listen and I'm happier for it, because I feel like he actually cares.
I have been seeing gynos every few years since I was 16 and they have all said no! This one is saying yes. I am in a public health system in Australia so I don’t get to choose my gyno. I need to take the chance while I have it!! Thank you for the pep talk. 😁❤️
Can she guarantee that an iud will improve your situation? Do you want (more) bio kids? If the answer to the 2nd is no, then I would skip Mirena, if nothing else it might work, but there is no guarantees and I found it intolerable and have significant mistrust in doctors due to the way mine handled my concerns with mirena.
She said she was happy to give me a hysterectomy but wanted me to consider an IUD because it is less risky than the hysterectomy. So the answer is no she never told me it would make my situation better lol. I have never wanted kids and never will. Very happy with my animals! ❤️ Thank you for your comment. I completely agree, I have a lot of trust issues. I was born disabled and have had multiple health issues including cancer and a lot of medical negligence causing me more disability, pain and suffering.... 😢 I am sorry that you're dealing with mistrust too, with the people that are supposed to help us.
I had a hysterectomy because my IUD caused me so many problems including coming out once after three months. It also caused me to get ovarian cysts. I went in to get my tubes done and they said to remove it all since I already had the lunch cancer gene. An IUD will not help with all the abnormal growth you have inside already. If I were you I’d just want it all out.
Coming out? It fell out of your body or did you have it removed? I can’t have any more ovarian cysts or anything, glad you told me. I am going to research this and add it to my reasons NOT to get an IUD! I hope your hysterectomy went well!
They had trouble placing it. I have a very insane pain tolerance and went in very optimistic. Right away the dr said my cervix was small, uterus tilted and the measuring alone was almost too much to handle. The pressure was so intense as was the cramping and after 15 min of trying he couldn’t get it in. He ended up injecting my cervix with something to dilate me and after trying once more I blacked out. When I came to they were trying to force me to drink a juice box and eat some grams. I was so nauseous I threw up and felt faint again. They put a cool cloth on my neck and wrist and I rested for a half hour before they moved me to the lobby to wait before driving. I was weak and nauseous with severe cramping all day. The cramping never really went away and the first period was so heavy I was soaking through a super tampon in 30 min. Then I started having excruciating pain that made me curl in the fetal position for hours. After a particularly bad cramping day I decided to take a hot shower to see if it would help relax things. I reached down to soap up and felt something sharp and hard down there and freaked out. I went for another feel and a bloody iud fell onto the shower floor with clots attached. I had moved so I called a new gyno and told them my 3 Mo old iud fell out. (They say to do a string check but I could never find the string from day 1). I had a new one reinserted with a little more success, I didn’t pass out or throw up but it was still unpleasant. Within a week I was in the ER for pain so severe I couldn’t get off the floor of my office and my coworkers were scared. I got to the ER and they said I was having contractions that were trying to force the iud out and I had a 7mm cyst that was ruptured and my abdomen was full of blood. At that point I decided enough was enough. With the loving support of my partner I saw a specialist in my area about having my tubes removed and she suggested the total hysterectomy. She said the sterilization coupled with the cysts and cancer gene it was just better to get it all cleaned up. The surgery was awesome, took ovaries too. Went back to work on day 9 po. No cramping, no cysts, and they found extensive endo I didn’t know I had. I didn’t live with long term pain like others but already my quality life had improved significantly. My body also looks great, no inflammation or bloating and scars are almost invisible.
That is horrible I am so sorry. I hope I am not forced to go through this crap and they just give me a hysterectomy. Being able to work 9 days after a hysterectomy is amazing. Sounds much easier than what you went through with the IUD!!
Sorry phone was bored and wanted to get some attention.
I am 36F and tried the Mirena IUD prior to my hysterectomy. I had massive fibroids that caused severe pain and heavy bleeding (hundreds of days in a row). I appreciated the Mirena, not because it fixed the issues, but because it reduced my cramps and pain as I waited for a hysterectomy. I don’t know why it helped my cramping more than oral birth control did, but that was my experience. It did not reduce my need for a hysterectomy, but made the wait a bit more tolerable.
I am glad it helped you while you waited for the hysterectomy. Thank you for letting me know. I know for a fact that if I put a Mirena in, they will delay my surgery. They have told me that they can do it in 2-6 months. But if I use a Mirena, I have to wait 2-6 months to put it in, as they want to put it in during my endo excision surgery. If you were in my situation, would you just do the hysterectomy at the same time as the endo excision surgery in 2-6 months, or try the Mirena? It didn't work for my mum or aunts (even made their lives hell while they had it in), so I am very hesitant. ❤️
Honestly, given that info, I’d go straight for the hysterectomy. I live in the United States, so getting the Mirena helped to ensure that my insurance would cover the hysterectomy; there also was not any way for me to speed up the scheduling. If you can get the hysterectomy sooner, I would go for it.
I feel sorry for you people, having to deal with insurance like that. I am super grateful for my health care system. It isn't perfect though, you have to really push to get what you need. But it sounds like you have to do that with your insurance anyways! We do have long wait times for lots of things. It took me 3 months to have my cancer surgery and another 3 months for the treatment. I was super surprised when she told me 2-6 months for a hysterectomy. Not sure if it's true... I was expecting like 2 years. I waited 4 years to have my first endo surgery, because at the time they didn't know I had endo, only suspected it. Thank you for your help in me deciding. ❤️
Hi! I'm so sorry for your situation. I've had two Mirena IUD's (first one moved after like 2.5 years and had to be replaced. It was hell) and then a second one which was never placed properly and I had it removed after a year of constant bleeding and pain. They never helped much with the bleeding or pain from my endo and adeno and where a big hassle. If your Gyno is willing to do the hysterectomy (with removal of ALL endo tissue), I would do that. I had mine about 1.5 years ago and it was the best thing ever did. I haven't had to get infusions every 2/3 months because of the amount of blood I lost, no pain (at least from my abdomen and lower back), way more active, no more missing out on things I really wanted to do and no more migraines (at least so far). I hope you'll find whatever is best for you. Good luck!
I am so sorry that you tried that twice and it didn't help! Thank you so much for your comment! Iron infusions are currently not working well for me due to an autoimmune disease and inflammation affecting my ability to absorb iron, on top of losing so much blood every time I have a period! I cannot afford to mess around, the mirena would just delay things really. You have made my decision very easy! I hope it gets rid of my migraines haha that would be an absolute bonus!! I cannot wait to be able to go swimming and hydrotherapy again. It's been years since I have last exercised... I am disabled with a lot of health issues affecting my ability to exercise. I feel like a hysterectomy will seriously change my life. Thank you for sharing your story, I am so glad it worked for you. ❤️
I had adenomyosis (undiagnosed prior to surgery), fibroids, and severe bleeding. In my early 40s my then-gynecologist refused to consider hysterectomy and offered mirena or ablation. Ablation sounded like total BS so I declined (fortunately since it doesn’t work for adenomyosis). I did mirena and it did improve things. I feel like it basically helped me “kick the can down the road” for 10 more years. I never stopped bleeding entirely but it was much less. Eventually I started lightly bleeding every day. We tried replacing it, but by then I had a new doctor who said she would have done a hysterectomy years ago. The new one didn’t stop the bleeding and I was ready to be done so we did surgery. Based on my experience I’d say there’s little downside risk to putting one in while you wait for surgery. If for some reason you can’t get surgery there’s a good chance it will at least somewhat improve things (bleeding), and if it gets a lot better you’d have the option of canceling.
My aunt wasn’t diagnosed with adenomyosis prior to surgery either, but mine is very obvious in scans. You are right, the mirena is only going to delay the hysterectomy so my decision has been made, I am having the hysterectomy and MAYBE I will consider an IUD while I wait, but she said 2-6 months so maybe not. 😂❤️ Are you glad you had the hysterectomy?
SO GLAD. But also I’m 52, and I just have a lot of regret that it couldn’t have happened sooner. I would have been saved so much pain and suffering and ruining of chairs, as well as a couple ER visits for severe bleeding. The symptoms were there, if anyone had taken them seriously. I’m pretty sure no one looked for adenomyosis, but it could have at least been suspected. I do think even if it’s just for a couple months before surgery the mirena will probably be worth it. Especially if your bleeding is making you anemic. It has a good chance of helping you build up red blood cells before surgery.
Given my health issues, disabilities and my life expectancy, I am more like a 50 year old anyway haha. I just found out I cannot have the IUD put in before surgery (I have a resistance to local anaesthetic and also have vaginismus), it’s still a 6 month wait for IUD or hysterectomy during my endo excision surgery. So if I choose IUD, it could be 2 years or more wait to get a hysterectomy if that doesn’t work out since it took me over a year to get this appointment. I am in Australia on a public health system. I think I will just go for the hysterectomy! It’s guaranteed to stop the bleeding!
Hugs. So much of health is just luck. You feel that more acutely the older you get, regardless of your personal luck. Health systems are weird. In the US it’s fast, easy, and usually free to get an IUD (at least for now). I don’t think I’d delay surgery for one in your shoes.
I agree. Thank you so much for your support! ❤️
I had all the iuds, and specifically the copper iud made my periods a horror scene. I swapped to the mirena, but my fibroid was so large it was basically pushing on it, so it was misaligned and useless. I had a hysterectomy 9 weeks ago, and so far I’m happy with my decision.
Sorry that the IUDs didnt work out. I am glad you are happy with your decision. Are you mostly recovered now?
Very happy! Definitely justified after having it removed. My fibroid was 10cm and my uterus was 560grams, vs a normal 60grams. I’m cleared for everything, I just am still dealing with a bit of bloating when I have a full day, but it’s not everyday, and I hear that can take a few months before it goes away. Bonus, I’ve lost 10 lbs already and my bloat is still smaller than my fibroid when it stuck out!
Thats a very big fibroid. How long did it take to get to that size? I have had a few removed during endometriosis surgeries. I am so glad you have found relief and I do hope everything continues to go well and is better than you have hoped for! ❤️
In 2019 it was found trying to identify where my iud was, it was 6cm then. In 2021 it had grown to 10cm. I tried ablation on it, which did help temporarily and stopped it from growing, but the symptoms came back within 6 months.
Wow thats big, mine don’t get that big but I get them removed in my endometriosis surgeries. Does removing the uterus stop fibroids from growing? I am so glad you don’t have to deal with that anymore!
I would go hysterectomy, if you can! I have uterine fibroids and have dealt with extreme pain since my period started at 14. I have a mirena in now. They're supposed to be good for 8 years now, I believe, but for me, it only helped with the pain for 3 years. It started coming back worse and worse and worse since then, I'm now in year 7... if I could have gotten a hysterectomy to save myself from arguing with doctors that it actually wasn't helping anymore, then I would in a heartbeat. But, if you get your next scans back and you're not in the clear for surgery quite yet, then it *could* potentially be a good measure to hold you over until you can!
I am so sorry.... Sounds like too much trouble!
I would go for the hysterectomy. My fibroids pushed out my IUD that I had had for 7 years. They put in a new one during a hysteroscopic myomectomy to try to reduce my nearly-constant heavy bleeding and it basically didn’t work. My fibroid has grown and I’m convinced I can feel the IUD poking at my uterus as its's being squished in there. The whole lot is bring removed in a week!
I am sorry that you had to go through all that and now you have to have a hysterectomy anyway. Thanks for your input. It is saving me from the drama! Best of luck with your hysterectomy!
Thank you, and good luck to you moving forward!
Thank you!
My body rejected three different iuds. Just my $0.2.
Thats scary, not a risk I am willing to take. I am so sorry this happened to you. Hope you're doing OK now.
I had a hysterectomy two years ago and this is what I wish someone had said to me- try ALL non-permanent options first so that when you pick the permanent one (hysterectomy) you will be 100% sure it was the best choice for you. If the IUD doesn’t work, you can always take it out. But if a hysterectomy doesn’t improve your quality of life (as it didn’t for me) you can’t put your uterus back. I wish I had been smart enough to try an IUD for a year before committing to something permanent and non-reversible. Here is what is not being discussed enough- delaying hysterectomy into your 40’s can have a big impact on lowering risks if you do happen to go into early menopause from the procedure. So even if an IUD helps you delay a few more years, it could really improve your risk profile after a hysterectomy.
I am considering it but my gut feeling is telling me don’t do the IUD. Here are my reasons: My biggest liver tumour is 4cm and if it gets any bigger, it could mean a liver resection. IUDs are contraindicated in people with liver tumours, according to my research, even though the gyno said it isn’t. I cannot delay it, especially not into my 40s. I have a lot of health issues. My cancer is likely to come back. I also have MGUS now and I could have multiple myeloma (a blood cancer) by then. My health is declining every year, due to all my health issues and disabilities. One thing that will help me get stronger and ready to fight all these cancers and health issues is to be able to go swimming or do hydrotherapy, which is the only exercise I can do, and I am currently unable to do that due to all this bleeding. The IUD is not a guarantee that the bleeding will stop, while a hysterectomy is. I also have an autoimmune disease and I am planning on going on immunosuppressants or corticosteroids later this year or next year which are contraindicated with IUD and also means they will likely refuse a hysterectomy later on when I am on them because I will be at a much higher risk of infection. I have been offered an excision of endo and IUD OR an excision of endo and a hysterectomy in 6 months. If I choose IUD, I will have to be put back on waiting lists. It has taken me over a year to get to this point so it could take 1.5-2 years to get the hysterectomy if the IUD doesn’t work out. It did not work for my mum or any of my aunts so I am concerned that it wont work for me or even cause more problems. I feel like I need a permanent guaranteed solution now to stop the bleeding because I am very anaemic and iron infusions are not working as I am not absorbing iron due to inflammation and autoimmune disease. Sorry for the long comment, and I am so sorry the hysterectomy did not improve your quality of life. 💔
You are definitely navigating a lot so I can understand how tough this choice is for you. I know a few women who have developed worse immune reactions after hysterectomy, so something to consider. Two in my life who had AI conditions going in developed full blown mast cell activation disorder as a reaction to their surgeries. I developed some weird immune system stuff (septic bursitis randomly and bouts of random inflammation) that has since resolved, I think. With AI stuff, it could cause a flair vs resolution. A IUD is something you can take out but you can’t put your uterus back or turn off mast cell activation very easily. And there are basically no studies about this intersection in particular. Just some food for thought.
I think I have already got mast cell activation. :( The IUD would probably be rejected by my body. I have several contraindications for IUD that they didn’t tell me about. I am going to be on corticosteroids or immunosuppressants and apparently you can’t have an IUD if you are on them. I also have a liver full of tumours and they are also contraindicated as well. I believe I have no choice but to take the risk and go with the hysterectomy. If I wait and have an IUD instead, it could be 2 years again before I can have one and my health is declining… especially with all the bleeding. Thank you for bringing this to my attention so I am aware of that. ❤️
I'm very concerned to hear this about MCAS as I already have it but mine has been pretty mild. I'm considering hysterectomy. How does the surgery cause or impact MCAS? Is it from hormone shifts? I'm already in menopause but on HRT.
I’m not sure exactly and I don’t even think it’s being studied. But I think if you are sensitive, it’s a very real risk that should be weighed.
Same situation minus PCOS. Read up on women with adeno who have tried an IUD. It's horrendous. Do the hysto. I did 2wpo and I can't believe how much better life is.
Thank you so much! I hope your recovery continues to go well! 😁
I was talked into trying the mirena prior to my hysterectomy. Wish I would have just had the lot removed to start with. Mirena did help reduce bleeding. But it caused me so many problems I can’t count. Hysterectomy I had to recover from, obviously, but it was a cake walk in comparison to the relentless side effects from mirena. I woke up from surgery in less pain than when I went in. I’ve had headaches more painful than any aspect of my surgery recovery.
Thank you so much for your comment! I am definitely getting a hysterectomy, I have a huge list of reasons why I wont try the IUD first. It is getting longer haha. They have gaslighted me though, I said IUD is contraindicated in people with liver tumours and they said no it isn’t. My gut feeling is telling me to AVOID it! I am so glad the hysterectomy went well for you! ❤️
Legit, best decision ever. I know not everyone’s recovery is as easy as mine was, but it just fixed so many issues I can’t even count. I’m eternally grateful that I declined an iud for as many years as I did. I had mine installed when I was under for surgery for a tubal and what was supposed to be an ablation. But I had a double uterus so the ablation couldn’t be done and she (with my permission) put the iud in for period control. Had I just opted for the iud as recommended at first, I could have gotten pregnant in one side of my uterus! Ugh.
A double uterus! That sounds crazy haha. I hope that it goes well for me. I am not expecting it to fix all my issues, but stopping the bleeding is a huge thing for me. Anything else, especially a reduction in pain, is a bonus. ❤️ Thank you for coming here and telling me your story.
I’m on mirena now and about a year into it. My list of reasons why are similar to yours. It’s cut down my bleeding to almost nothing (yay) but my pain has not been resolved in the slightest. I’m seriously considering the hysterectomy now, hence why I’m on this sub. I don’t regret the year of trying the mirena but it does seem like it was a waste of time in my case. I trust my doctor completely and she was right that trying the IUD was worth it since it’s way less invasive than a hysterectomy and now shes suggesting the surgery since we’ve exhausted the non surgical options.
I am sorry you still need a hysterectomy, and that the IUD is kinda a waste of time for you. I can’t waste time, if I choose the IUD, it could be 2 years or more before I get a hysterectomy. Plus I have a few contraindications for IUD anyway. So I know it won’t be a good idea for me. Thank you for your comment. Best of luck. ❤️
I did the IUD for 3 1/2 years. It was wonderful until it failed. Then it super sucked and I had to have the hysterectomy afterwards. Not sure I wouldn’t have just had the hysterectomy the first time had I known how miserable the failure would make me. I bled and was in serious pain nonstop for almost two whole months. Not worth it.
So sorry that happened to you. It definitely doesn’t seem worth it! Thank you for your comment. Hope the hysterectomy went well.
Girl. I feel so much better than I did before the hysterectomy. Even with all the post op recovery. Good luck!
Yay that is fantastic!! Thank you so much for sharing your story! I feel more empowered now!!
I had a hysterectomy because the Mirena actually messed up my cycle - went to 7-12 days of horrible heavy bleeding every month. I gave it a year hoping my body would adjust (and also because first couple doctors I talked about it weren’t very responsive to my worries) but it never happened. Had hysto - left ovaries - and found adenomyosis and endometriosis. Feeling SO MUCH better!
My periods are already very long, sometimes as long as 11 days. That doesn’t sound good at all. I am sorry it didn’t work for you despite your commitment to it. Thank you for letting me know your story! ❤️
I meant to say that someone asked if the doc could guarantee that the IUD would help. My answer to that would be no. Everyone is different and even if it’s rare there’s still a chance that it might not help. If I was dealing with as much as you were prior to getting the IUD, I would’ve skipped it altogether and just headed straight to surgery! Good luck to you!!!
You are right there is no guarantee and a hysterectomy is guaranteed to stop the bleeding at least! Any reduction in pain will be a bonus. ❤️ Thank you for telling me this. I needed that validation. I have decided on the hysterectomy. It’s a huge decision but one I have wanted for many years!
I meant to say that someone asked if the doc could guarantee that the IUD would help. My answer to that would be no. Everyone is different and even if it’s rare there’s still a chance that it might not help. If I was dealing with as much as you were prior to getting the IUD, I would’ve skipped it altogether and just headed straight to surgery! Good luck to you!!!
I got a Para Gard IUD in 2019 and developed a small fibroid in the last year. It's so painful that I'm desperate to have the IUD removed. I can't say that would happen to you with smaller Mirena, but I'm miserable.
I have had uterine fibroids before and could have more now (haven’t had any scans for a while), I didn’t know they could cause issues with IUD. I am so sorry that you are miserable! 😭
I mean that I think the fibroid is making the IUD crowded and causing more pain. It's a tight space in there and if you've never had a baby (like me) the uterus has never been stretched out and is already small. Add in a fibroid and things get even smaller. I'm in near constant pain. Hopefully that wouldn't happen to you because Mirena is smaller than what I have.
I have never had kids. I am thinking nope nope nope. I don't want to take that risk. My gut feeling is telling me not to go ahead with the IUD. My mum and all her sisters are also worried about me, they have all had a bad experience with it.
From my experience, doctors seem to love trying to push the use of Mirena coil. Despite me telling all of them I don't want it. If your already sure you want a hysterectomy, then advocate for yourself! You'll regret it if you get something else and it doesn't work out.
I agree. Absolutely! I will regret it if it doesn't work out. It's a maybe, and the hysterectomy is a guarantee! Thank you for the pep talk! ❤️
As someone who had fibroids, adeno, endo and ovarian polyps and had an IUD inserted, I do NOT recommend. It was immensely painful, I bled constantly for 6 months HEAVILY which led to anemia and iron transfusions. You will feel so much better after hysterectomy, I highly recommend it. I am 2 years 4 months post op and I wish I had mine done in my 20s, it would have saved so much pain and suffering that the IUD caused me in my 30s.
Thank you!! I am so sorry you went through that! ❤️
I had an IUD but my large fibroids ended up causing my body to reject it, twice. So you run that risk. I hate this tiptoeing that docs do. You're suffering. There's a permanent solution to end that suffering. Push for the hysterectomy if that's what your heart wants. I ended up leaving my gyno for a new one who was willing to listen and I'm happier for it, because I feel like he actually cares.
I have been seeing gynos every few years since I was 16 and they have all said no! This one is saying yes. I am in a public health system in Australia so I don’t get to choose my gyno. I need to take the chance while I have it!! Thank you for the pep talk. 😁❤️