Hysterectomy due to Endo pain

[Jackie990]

Hi all. I'm not from the UK but I don't think endometriosis cares...Just wondering if any of you out there has had a hysterectomy due to severe Endo pain? I am 35 and that is what my Dr is leading me towards (I also have a large & painful uterus). I would like to know if the hysterectomy actually helps to relieve Endo pain or what some of your results are???

[livvi_livvi]

Hi,

I had a total hysterectomy with both ovaries and tubes removed at 28 for the severe pelvic pain.

At the time rightly I had to try every treatment possible first. This included various pain meds and treatments such as nerve blocks. It was only agreed as a viable option because all of these failed and even on the maximum dose of morphine I could barely stand up.

In terms of the operation removing the pain it did so by the 6 month mark and I was on no pain meds but by the 9 month mark the pain returned and I am now a year on from the op and on high controlled pain meds along with a suspected diagnosis of fibromyalgia. So its a tough call it has resolved my pain however it is likely the trauma of the op and previous pain led me to develop a widespread pain condition.

My advice would be to find an experienced endo specialist and try all treatments they suggest firstly.

Xxx

[Sweetyassi]

Hi,

I learned the hard way, hysterectomy isn't a cure for endometriosis. After having full hysterectomy done my endo still came back. I guess my skilled surgeon missed a little endo that was probably hiding from sight. Now I have tried many HRT stuff and it triggers the endometriosis to become active again. Please don't rush into having hysterectomy done. Please do your research and ask for second or even third opinions before going ahead with hysterectomy. You are still young. I had my hysterectomy at 34 and regretted.

Sweety

[Katinldn]

Hi, I had a hysterectomy at 34 (kept ovaries and Fallopian tubes) for endometriosis and adenomyosis and although it massively improved the quality of my day to day life and reduced my pain, sadly my endo did return again. The relief from the adenomyosis was life changing so certainly not a decision I regret, but it wasn’t a cure for the endo. Make sure you do lots of research, get second opinions and ensure you have all of the information before you make your decision. Good luck! X

[Jackie990 in reply to Katinldn]

Thank you so much for replying. I've been dealing with all of this for about 15 years. Had five surgeries to remove Endo and I'm just tired of it all. The last robotic surgery was in February & I'm still having a lot of pain. There are no "good" days anymore, just ok. My husband doesn't understand it all & we get in reoccurring arguments about it. I've had two surgeries in the time span of a year & both times had endo. It's very frustrating that he doesn't understand that I hurt all the time & am very fatigued. Like I said I'm just tired of it all, I've been on the same pain medication for years & it doesn't seem to do anything but if I don't take it I get withdrawal symptoms that make me feel even worse. Ive talked to my Dr several times about everything but seem to get nowhere and I just feel stuck. I don't know what to do anymore.

[Anastasia17]

Hi. You may have already tried it, but after my laparoscopy, as I can't take any NSAID, I took CBD tablets and it really made me feel so much better, I could still feel the localised pain, but not the pain through my whole body. It lifted the anxiety and I felt so much more relaxed in myself. A lot of endo sufferrers prefer to take the oil version, as its a stronger dose, but due to my sensitivity, the tablets were enough for me. I hope you find what suits you best. Kind thoughts

[HerbM in reply to Anastasia17]

Which CBD tablets did you try? There are so many confusingly different formulations on the market.

[Anastasia17 in reply to HerbM]

Hi HerbM. I took the CBD tablets from H&B as the oil can have a strong taste. Next time, I will get it online from Simply CBD as I have heard other endo sufferrers talk about it, but its a case of reading what other people talk about . Take care. 😊

[Thompson36]

Total Hysterectomy last year after 6 previous laps since being diagnosed at 21, now 49. I also had adenomyosis. My bowel was stuck and had adhesion issues and US ligament involvement. Although I recovered well the pain was back within months so he either missed some or it’s deeper than he suspected. Sadly he now only treats private patients which I can’t afford. Still in constant pain and can’t get help from anyone, the GP has given up.