Hysterectomy to treat endometriosis?

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I have endometriosis which has spread to my stomach (this was discovered 18 months ago during an unrelated surgery). I have also had several ruptured ovarin cysts over the last few years. I suffer with pretty severe lower back/pelvic pain, irregular and heavy periods, etc. I am at the end of my rope and I can't continue to live like this. I am 36 and I feel like this pain has run my life long enough. I have tried several birth control pills which have only caused more problems for me. The possibility of a hysterecomy has been discussed with my dr. in the past but we decided to wait because I am so young. I have an appointment with her next week and I was hoping to get some input from others who have had a hysterectomy. I've heard horror stories as well as sucess stories. This is a huge decision and I would love some advice. 

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  • Posted

    Hi Laura

    I had a total hysterectomy at 27 in 1982. I had to push adamantly to get it because of my age. It was a great decision for me. Yes I had some pain afterwards but that went away. No, HRT wasn't as good as my own wacky hormones but I'm thankful for all the years I used them, right up until just past another 27 years. Then they thought I had diverticulitis but it was endometriosis at the end of my colon. So I have an unattractive upside down T scar on my belly thanks to endo.

    Not everyone's hysterectomy story is as happy as I consider mine to have been. Though I originally expected to do it myself, everything I read here convinces me that this, "let's try to save one ovary" plan is a crock. It ALWAYS has to come out later and there you are with yet one more major abdominal surgery, several years older, and you've run cancer risks in the meantime. Ditto for any suggestion to leave tubes or cervix.

    In my case the hysterectomy was elective right up until they cut me open. In the 6 weeks since my laparoscopy I'd crossed completely into severe endo. Back then we only had 3 categories, mild moderate and severe. Don't know what they call it where you are now. Many spots were becoming cancerous where nothing had been 6 weeks earlier. The ovary they thought they could save was by then unsalvageable.

    No one, not your doctor and not a single one of us here can say what your outcome will be. It is a crap shoot, but it's one where you can continue along with faulty organs which are not necessary to your survival and function beauty and worth as a woman, or you can jettison them. You've already had it impact your stomach so you are in a much much worse position than I was in. I just had it on everything reproductive plus some spots on my intestine. Only you can decide.

    If you have a total hysterectomy and you are sexually active, absolutely obey whatever length of ban is put on each kind of activity. That is really serious. Also be prepared to need a lot more lubricant even on HRT. Maybe you won't need it but it's better to be prepared. Penetration will be uncomfortable for a while. No one can predict that, either.

    This is all scary and it's all painful, physically & emotionally. As with abortions it takes about 6 months to get hormones and emotions settled, with HRT. I've no clue how long it takes without. I took conjugated estrogen rather than combined.

    We're all here for you. Trust that whatever decision you make will be the correct one for you. Good luck, Laura

    Aitarg

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    • Posted

      I can't thank you enough for your honest and informative reply! You have helped me so much! I am very lucky to have a gynecologist whom I trust completely. I hope she will also have some words of wisdom and advice for me. I am anxious for my appointment Tuesday afternoon. Thanks again! 

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    • Posted

      I'll keep you in my prayers. Be sure to take paper & pen, or you can record the visit. Even when there's not so much at stake it's hard to take everything in & remember it. Taking someone along can be a mixed blessing if you find out in the process that they have their own wants for you; if you're not sure the person supports your decision 100%, don't take them.

      I'm pullin' for you Laura.

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  • Posted

    Laura, 

       Make sure you do a lot of research because I have read numerous times even a hysterectomy does not cure endometriosis- there is no cure.  My gynecologist has suggested hysterectomy too (I'm 29 years old so not considering at this point) but I continue to read from valid sources that it does not cure endometrisis.. Sadly, endometriosis is very misunderstood- hard to treat something that you don't understand.  Only you know what is best for your body- make sure you listen to that inner voice! I know the feeling of being desperate to get rid of the pain- which is why I finally decided to have a laparoscopy after15 years of pain and being ignored by doctors.  I had an awful recovery and months later still do not feel back to normal.  I can't imagine how a hysterectomy would affect me.  Also, after my procedure I became very sick a few days after and could not stop throwing up.  I went to see my doctor and she told me I should go see my primary care physician for panic attacks? I was appalled- and could not fathom the way I was feeling any longer.  I could not eat anything for days and she told me of course you feel sick for not eating try to eat.  Of course I had anxiety I have battling this for 15 years and when all I wanted to do was feel better I was more sick than ever.  She did nothing to help me at all- I eventually had to go to the ER where I was told I had an illeus which means part of the bowel was paralyzed and he should I should not have been eating anything besides a liquid diet.  I feel so depleted from the whole process- The doctors just don't care they have thousands of patients don't even know who you are.  I did finally get a confirmation that I had endometriosis which I knew all these years I did and was ignored by doctors.  Anyway- on a more positive note the best thing I have done for my endometriosis was not have my periods anymore.  I always refused to be on birth control because I wanted to know what was really wrong with me but it is def the best treatment skipping periods is huge suffering gone from my life.  Also. I take probiotics and fish oil everyday which seems to help some bowel issues (i've been told I have IBS too by my PCP but who knows the symptoms all over lap)... 

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