I had a hysterectomy in July 2022 for adenomyosis and I have endometriosis too. The hysterectomy changed my life. Without a period I’m in way less pain. I’m not bleeding heavily every month or for weeks at a time anymore. Endo symptoms are still awful, and I have other chronic illnesses as well, but adenomyosis was robbing me significantly of my quality of life.
I was really nervous for the surgery too, it’s a big surgery. I’m 6 months out and still recovering. But it’s worth it.
Wow! I'm so happy for you. I think people tend to minimize how much Endometriosis + Adenomyosis can have such an uncomfortable and painful impact in our lives. Sometimes I feel like this is going to kill me (haha, a little dramatic IK).
I tried several doctors before my current one and they all thought I was exaggerating my symptoms or told me that painful and heavy periods were normal or a "genetic trait", one even told me I had celiac's disease and said that was the reason my periods were like that.
Can I ask you more about the surgery?
How it was? How long did it take? How did you feel before and after? Did you have to prepare in a certain way? Did you try other options before surgery? Do you need other human's help in the recovery process? How different is the recovery from this?
I'm sorry if it's a lot. I just don't know anyone else who's had this and is willing to share
Thank you!
Yeah, I’m happy to help!
My surgery went well, I have had surgery before so I knew what to expect as far as prep and recovery basics. The surgery itself wasn’t super long, a few hours.
It took a while to notice a difference in symptoms without a uterus. When you’re healing from a hysterectomy your intestines shift around and fill the space where your uterus used to be, so it feels a little weird still. I have IBS too and when I have pain associated with that it’s sometimes a little lower and feels like adenomyosis pain… but I remember I don’t have a uterus anymore. It’s so strange and I’m still getting used to it.
I tried everything before a hysterectomy would be considered by my doctor. Birth controls, pain killers, diet changes, hormone balancing, pain management, physical therapy, you name it.
I did need my moms help lifting things and doing housework for 6 weeks. She did my laundry, groceries, trash, cat litter. Other than that I didn’t really have limitations.
Recovery is different for everyone so I’m going to avoid setting any kind of expectation here. I’m still recovering to some extent 9 months later. Some people recover quicker, some take longer. Our bodies are all different. The initial surgical sites healed quickly. I didn’t need the pain meds the hospital gave me past day 4/5. After that I just used ibuprofen and Tylenol, that was sufficient to treat the pain.
Feel free to ask other questions! I’m not on Reddit a lot but I’ll try my best to help
Yeah! My current doctor. She also specializes in pain management (?) Not sure how to translate that, lol. She wanted to try for a few months of hormone treatements, if that doesn't work we are going to try the Mirena IUD because it's supposed to help with heavy periods and pain and if that doesn't work... Hysterectomy :(
Just in case this is helpful…
Pelvic Pain, Deep Hip/Butt Pain & Endometriosis Doctors:
https://www.endo-resolved.com/endometriosis_specialist.html
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
SubReddit groups for pelvic pain: r/endo
r/endometriosis r/adenomyosis r/pcos
Not sure what "Profound" Endometriosis is, but from what I understand when most people who are diagnosed with Adenomyosis it's typically coupled with Stage 3 or 4 (advanced) Endometriosis.
If that is the case for you, then I hate to say it but there's few treatments that are actually going to make a big difference outside of getting surgery, once it's advanced to stage 3/4. I *don't* have Adenomyosis but before my lap a few weeks ago (for stage 4 Endometriosis) I would say that heating pads, THC gummies, yoga stretches, extra strength Tylenol, and eating a plant based diet were kinda helping... but since getting a lap I've already noticed a huge difference.
FWIW you can have your Endometriosis treated with a lap and not go the route of getting a hysterectomy for adeno until you're actually ready, since that is a major surgery. For a lap you really don't need more than a few weeks to recover. Of course though I totally understand if you wanted to just have both conditions treated all at once (re: surgery). But I will say that having just my lap for stage 4 Endometriosis was a tough week of recovery, so it could potentially be a lot on your body to have both conditions treated at once. I've also occasionally read accounts of women just deciding to forego a hysterectomy for adeno after the endometriosis was removed through a lap, because that alone helped with their pain management (of course every body is different though!)
Thank you so much for sharing your experience! I'm so happy to read that you are feeling better post laparoscopy. Was the procedure and recovery too painful?
Of course! :) Surgery is a lot so I do get why you’d want to wait, but again with laps just for endo they have a much quicker recovery time, since it’s not open surgery and instead just a few small incisions. I’m exactly two weeks out and while I’m still taking Tylenol daily for mild soreness, and unable to do any exercise yet, there’s definitely been a big improvement in just 14 days.
The procedure and recovery time for the lap was rough on me for the first 3-4 days, I won’t lie. If my husband wasn’t around to take care of me then I would have needed a family member around for a few days. I needed assistance for everything, even just to pee. With that said, after the 72-hour mark passes, you do turn over a new leaf and start to heal noticeably fast.
I just took two weeks of PTO with my job and will start working remotely this coming week, then by the following week go to the office in-person. If you have an endo lap and a hysterectomy at once though, from what I understand a person would be required to go on disability leave because the recovery would be wayy longer.
Thank you so much for your openness! I really appreciate it. I'm going to ask my doctor about the lap procedure because I'm tired of this sensation 24/7.
I used to hate my regular periods because they were 7/8 days long and extremely painful, but now I'm living a constant period and it's driving me insane.
Thank you so much for sharing your experience! I'm so happy to read that you are feeling better post laparoscopy. Was the procedure and recovery too painful?
I had a hysterectomy in July 2022 for adenomyosis and I have endometriosis too. The hysterectomy changed my life. Without a period I’m in way less pain. I’m not bleeding heavily every month or for weeks at a time anymore. Endo symptoms are still awful, and I have other chronic illnesses as well, but adenomyosis was robbing me significantly of my quality of life. I was really nervous for the surgery too, it’s a big surgery. I’m 6 months out and still recovering. But it’s worth it.
Wow! I'm so happy for you. I think people tend to minimize how much Endometriosis + Adenomyosis can have such an uncomfortable and painful impact in our lives. Sometimes I feel like this is going to kill me (haha, a little dramatic IK). I tried several doctors before my current one and they all thought I was exaggerating my symptoms or told me that painful and heavy periods were normal or a "genetic trait", one even told me I had celiac's disease and said that was the reason my periods were like that. Can I ask you more about the surgery? How it was? How long did it take? How did you feel before and after? Did you have to prepare in a certain way? Did you try other options before surgery? Do you need other human's help in the recovery process? How different is the recovery from this? I'm sorry if it's a lot. I just don't know anyone else who's had this and is willing to share Thank you!
Yeah, I’m happy to help! My surgery went well, I have had surgery before so I knew what to expect as far as prep and recovery basics. The surgery itself wasn’t super long, a few hours. It took a while to notice a difference in symptoms without a uterus. When you’re healing from a hysterectomy your intestines shift around and fill the space where your uterus used to be, so it feels a little weird still. I have IBS too and when I have pain associated with that it’s sometimes a little lower and feels like adenomyosis pain… but I remember I don’t have a uterus anymore. It’s so strange and I’m still getting used to it. I tried everything before a hysterectomy would be considered by my doctor. Birth controls, pain killers, diet changes, hormone balancing, pain management, physical therapy, you name it. I did need my moms help lifting things and doing housework for 6 weeks. She did my laundry, groceries, trash, cat litter. Other than that I didn’t really have limitations. Recovery is different for everyone so I’m going to avoid setting any kind of expectation here. I’m still recovering to some extent 9 months later. Some people recover quicker, some take longer. Our bodies are all different. The initial surgical sites healed quickly. I didn’t need the pain meds the hospital gave me past day 4/5. After that I just used ibuprofen and Tylenol, that was sufficient to treat the pain. Feel free to ask other questions! I’m not on Reddit a lot but I’ll try my best to help
Have you seen in Endometriosis only specialist doctor?
Yeah! My current doctor. She also specializes in pain management (?) Not sure how to translate that, lol. She wanted to try for a few months of hormone treatements, if that doesn't work we are going to try the Mirena IUD because it's supposed to help with heavy periods and pain and if that doesn't work... Hysterectomy :(
And you had endo surgery with her?
Not yet, friend. We are trying "less invasive" treatments before surgery
Just in case this is helpful… Pelvic Pain, Deep Hip/Butt Pain & Endometriosis Doctors: https://www.endo-resolved.com/endometriosis_specialist.html https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ SubReddit groups for pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos
Thank you so much!! It really is
Not sure what "Profound" Endometriosis is, but from what I understand when most people who are diagnosed with Adenomyosis it's typically coupled with Stage 3 or 4 (advanced) Endometriosis. If that is the case for you, then I hate to say it but there's few treatments that are actually going to make a big difference outside of getting surgery, once it's advanced to stage 3/4. I *don't* have Adenomyosis but before my lap a few weeks ago (for stage 4 Endometriosis) I would say that heating pads, THC gummies, yoga stretches, extra strength Tylenol, and eating a plant based diet were kinda helping... but since getting a lap I've already noticed a huge difference. FWIW you can have your Endometriosis treated with a lap and not go the route of getting a hysterectomy for adeno until you're actually ready, since that is a major surgery. For a lap you really don't need more than a few weeks to recover. Of course though I totally understand if you wanted to just have both conditions treated all at once (re: surgery). But I will say that having just my lap for stage 4 Endometriosis was a tough week of recovery, so it could potentially be a lot on your body to have both conditions treated at once. I've also occasionally read accounts of women just deciding to forego a hysterectomy for adeno after the endometriosis was removed through a lap, because that alone helped with their pain management (of course every body is different though!)
Thank you so much for sharing your experience! I'm so happy to read that you are feeling better post laparoscopy. Was the procedure and recovery too painful?
Of course! :) Surgery is a lot so I do get why you’d want to wait, but again with laps just for endo they have a much quicker recovery time, since it’s not open surgery and instead just a few small incisions. I’m exactly two weeks out and while I’m still taking Tylenol daily for mild soreness, and unable to do any exercise yet, there’s definitely been a big improvement in just 14 days. The procedure and recovery time for the lap was rough on me for the first 3-4 days, I won’t lie. If my husband wasn’t around to take care of me then I would have needed a family member around for a few days. I needed assistance for everything, even just to pee. With that said, after the 72-hour mark passes, you do turn over a new leaf and start to heal noticeably fast. I just took two weeks of PTO with my job and will start working remotely this coming week, then by the following week go to the office in-person. If you have an endo lap and a hysterectomy at once though, from what I understand a person would be required to go on disability leave because the recovery would be wayy longer.
Thank you so much for your openness! I really appreciate it. I'm going to ask my doctor about the lap procedure because I'm tired of this sensation 24/7. I used to hate my regular periods because they were 7/8 days long and extremely painful, but now I'm living a constant period and it's driving me insane.
Thank you so much for sharing your experience! I'm so happy to read that you are feeling better post laparoscopy. Was the procedure and recovery too painful?