Has anyone gotten rid of endo with a hysterectomy?

My Gyno just advised me today that with the Depo shot not working the way it should for me ( I have had 5 shots now, and month long bleeding every other month), that I should have a hysterectomy. She says my quality of life is suffering (duh) and that she wouldn't have made it as long as I have like this, she would have ripped everything out by now. I asked her how is a Hysterectomy suppose to help with endometriosis? She said that it helps by not having me bleed every month to set off my endo spots. Now this is where I am confused. It has nothing to do with my "uterus minions" as they are outside of the uterus. I have had a lap in January where they discovered I have Stage 3 (moderate) endo. But my best friend said that most places are saying that if you get the uterus removed, there is a less likely chance of new endo spots because she believes in the retrograde theory.

So, I just would like to know if the removal of my uterus would really help in any way, shape, or form of the endo pain.

14 Replies

  • It will not deal with 'endometriosis' unless that is also tackled at the same time. BUT

    it certainly can improve your quality of life to no longer be having painful periods (not the same as painful endo) but bad enough in their own right. Also the uterus being a whopping muscle that likes to cramp up in agony - having that taken away sure would improve your monthly experience no end.

    However - you do need to keep the ovaries or at least one, to protect your bones and heart health and also to avoid menopause and needing HRT for ever and a day every day. Keeping ovaries is much better for the rest of you - but it will still keep feeding any remaining endo too. As will HRT.

    For this reason a hysterectomy is not the solution to endo - but certainly will help you cope better by not having the additional hell of periods to deal with each month too. Think of periods and endo as two separate events happening at the same time.

    You can try an ablation which is half way to a hysterectomy - basically cooking or freezing the lining of the uterus - causing wounds that scar and no longer grow a menstrual lining each month. This scarring builds up and can stop you having bleeds. It might not do much for the pain and cramping, You'd have to ask someone who's had the procedure which I haven't and cannot.

    It is not an option if you have a deformed uterus set up like mine - only those with normal shaped uterus need apply. But it is an option that isn't so drastic as hysterectomy surgery and might be worth enquiring about and researching.

    Microwave Endometrial Ablation MEA has only been available on the NHS a couple of years, but lots of hospitals do undertake the procedure - takes bout 20 minutes and you are an outpatient.

    On the other hand you might so sick and tired of all things uterus that you do just want rid of it - which is understandable if all else has failed.

    Just be mindful that it is not the answer to endo specific pain or adhesions either and there are risks to a hysterectomy as highlighted in the following daily mail article


    do have a read of the comments underneath from top endo surgeon Mr Trehan who uses the comments to further explain things that were omitted from the main article.

    Removing the uterus will certainly reduce the likely hood of new endo spread but it won't affect any alredy existing endo which remains active.

    One way for new endo spread is retroactive bleeding - that is backflow of periods along the fallopian tubes carrying freshly shed endo stem cells from the uterus where they are supposed to be, and they get flushed in to the tummy cavity and can land on new locations and start nesting there.

    If you stop periods - either with hormones like miren coil, depo provera (which can take up to a year to work by the way), or any other means like surgery (ablation or hysterectomy) you stop the period bleed from happening and flushing new cells to new places through the tubes. So in that sense hysterectomy or any other option for blocking that route of transfer will help reduce the chances of new endo spreading. it is not the only way endo spreads but it is the most likely in most women.

    I seem to remember reading that 50% of women on Depo Provera stop their periods within 1 year. So it isn't for everyone.

    Definitey some homework to be done so you know the various options available to you now and can discuss them with gynae surgeon at next opportunity. Best of Luck stemming the tide whatever you decide to do.

  • yeah, lots and LOTS of homework is needed. I do have one ovary remaining from the last lap done, and I refuse to give it up. Estrogen and I do not get along well, so I won't be able to take HRT. I would plan on having them clean up my insides (again) once in there. I have never had problems with excessive bleeding or unusual periods. My uterus is retrotipped, so I am not sure about the ablation would work either, or if it is even worth it.

    The scary part is, there are ladies who have had the hysterectomy and a year or so of pain free (after the endo clean up of course) and the endo COMES BACK!!!!! This is some very tricky hateful stuff we have to deal with. :(

    I just found out there are 2 types of hysterectomies. Is it better to keep the cervix or take it out? You would think that dr.'s would be more descriptive and full of answers.

  • If it is any help may i add that i have had ablation therapy and whilst it is fantastic for reducing heavy blood loss it does not (in my case anyway) reduce pain or cramping caused by Endo xx

  • Thanks! I was wondering if it would help with the pain. That is where my most concern is. The never ending, unrelenting daily pain. I am glad you mentioned about the ablation, as my Mom just told me to look into it as a possibility.

    All other comments are much appreciated. Whether it is for something helpful, or to tell me what probably won't help me.

  • HI, Can I ask if it stopped your periods / period pains? Its something I'm looking into too - thanks

  • If what has stopped the pain/period? The depo shot?

  • Hi Charlie....... having ablation therapy for me did really reduce my periods and reduce some of the cramping/passing of large clots although did not stop them. The doctor doing the operation did however advise me that this was a possibility but wasn't the outcome for me. If you are suffering with heavy periods and either have finished having your family or do not wish to conceive then this is a good option for yourself. BUT ablation therapy did not reduce the pain caused by Endometriosis for me....i still get all that horrible pain from endo every single day :(

    Research a lot and talk and ask questions with your doctor, i am glad i had it done for the ability to reduce the blood loss.

    Good luck with you decision making xxxxxxx

  • Thaanks for your reply. Its just one of the things Im looking into, as the only options my gynae gave me was stay on Prostap injections, 1 year on, 1 year off until natural menopause (Im 44), or hysterectomy. I think the hysterectomy route is a major thing to go through with no guarantee of resolving the endo issues, especially as I cant really afford to take a long time off work for recovery. As I do dread my periods, because I never know how painful they are going to be, for me at least, reducing or preferably stopping them would remove one of my problems, even if I still had the endo pain. Hope you are having a reasonable endo day!

  • Hi Advarklips,

    Making the decision on whether to have your uterus removed is a very personal choice that no one can make for you.

    Without knowing more about your pain experience, whether you had hoped to one day have children or if you are all done with childbearing, and how you look at the idea of giving up your female parts. Some women feel this makes them less of a woman.

    I had my hysterectomy for many reasons. When repeated laporoscopies for endometriosis were not keeping the pain at bay long enough anymore, when ultrasound showed my uterus to look inhumogenous and adenomyosis was susspected, I was all done with childbearing, I was intolerant of synthetic hormones, and the pain was relentless not just intermittent anymore. And I didn't' worry that the lack of my uterus would make me feel less of a women.

    I have no regrets, I got to participate in my children's mid youth to adulthood, it also allowed them to take up hockey and basketball ect. Because I could participate full time and be dependable for them when my husband was away.They might one day realize that although it meant a lot to them it gave me reason to fight. And I will cherish those times till I die, the bond it built.

    I can't tell you it's the right or wrong decision for you, but I wish you all the best on getting the best quality of life back that you can.

  • So is the pain gone for you? All the way, or completely and totally bearable now?

  • That too varies from one individual to the next, I wasn't stage three like you to begin with. My amounts of endometriosis were and only graded stage one with the last lap before the hysterectomy I did have adhesions and hysterectomy other peritoneal cysts, para- ovarian cysts and the adenomyosis. Which I still don't know what that is.

    When they did the hysterectomy a year after the last lap there was some endometriosis on the ovary they cauterized as well as the cul de sac.

    It took a long time for the back pain I was always burdened with to subside. But just this last spring has returned 11 years after hysterectomy. Still as of yet to be confirmed if endometriosis is the cause. It wasn't like I was ever really confident it was over because I kept my ovaries and had occasional cysts now and then some bursts. And my back fatiqued easily when it came to stopping over activities like gardening ect. But a lot better than perpetual pain every day of the month.

    Wish I could be more help.

  • Removing the uterus and ovaries will get rid of endometriosis. Doctors are reluctant to do it for understandable reasons particularly if you are young and have no children. I had 5 laparotomies before a kindly surgeon gave up and released me from 7 years of pure hell. I was 32. Endometriosis feeds on hormones. No hormones no problem. After my radical hysterectomy they put me on HRT and guess what? Back came a huge chocolate cyst. The solution for me was to struggle through a whole year of early, surgically induced menopause without HRT. After a year I was able to take it with no recurrence of the problem. I would say removing your uterus without the ovaries is pretty pointless. Life without them even if you are young was 100% better for me than struggling to keep organs that were ruining it. Ask your doctor about this.

  • I am 35. I worry about my body when I get older if I remove everything. Add back therapy really isn't the best choice for me as my body doesn't like any estrogen that isn't mine. I have read that if you use HRT, you are still likely to get endo, because of the estrogen. Ugh, what a mess. I am very happy everyone is trying to help with this. How many years has it been for your hysterectomy?

  • I am 67 now. I have survived quite well post radical hysterectomy. I never regretted it for a second mainly because I simply had no choice. Unfortunately I have SLE as well as having had endometriosis and that has caused multiple problems. I also have severe osteoporosis- the top of my spine has a curvature and I am a lot of pain. Thats to do with early menopause, lack of HRT ( I couldnt take it for one year post hysterectomy because of recurrence of cysts) after one year I could. SLE complicated my situation with lots of steroid treatment and other drugs. If I just had endometriosis I think life without the gynae organs that were making life intolerable would have been just fine. There is life without a uterus and ovaries that are causing you grief. I have had no recurrence of endometriosis in the last 34 years but to this day I remember that dragging pain that almost drove me insane.

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