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Endometriosis UK
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hysterectomy?

Hi, I would really love to hear anyone's stories, help or advise on whether to have a hysterectomy or not. I am 40, currently in a lot of pain with my endo and feel so low. Is it better to have ovaries removed or not? And if so do we have to take HRT afterwards. I'm worried as it contains oestrogen which may cause further problems. thanks x

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Hi, I am wondering why you are considering a hysterectomy? Is it because of endo?

If so, unfortunately hysterectomy rarely cures endo in that endo may be on other non-reproductive parts of the body such the peritoneal lining, the bowel, bladder, Pouch of Douglas and even in rare cases in the kidney, lungs and brain. This means if endo isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there. If you'd like to know more about this then there is a woman called Lindle on this forum who has posted on here regarding this subject quite recently so search and you will find this.

The gold standard of surgical treatment for endo is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. That's why it's important that excision is done by an endo specialist found at a BSGE accredited endo centre. If you are suspected of having or have been formally diagnosed as having endo then you have the right to request a referral from your GP to any of the nationwide centres you choose.

However, it is worth remembering there is no cure so even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.

Therefore it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.

Trying hormone based treatments such as the pill, the coil or zoladex is not necessarily a bad thing provided a woman's condition is monitored and symptoms managed and is not so advanced as to cause further complications (eg endometriomas on ovaries aka chocolate cysts which could rupture and spread endo and/or cause adhesions, or adhesions forming resulting in organs being stuck together). Please note I am not trying to scare you by saying this, just make you aware that these are possibilities in advanced stages of this disease so finding the right specialist as soon as possible can prevent further complications later on down the line.

As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.

Often women with endo have to educate themselves rather than rely on their GP's or the so-called specialists. Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist amongst the medical professions ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo". There is a woman on this site, called Lindle, who has recently posted in detail about rectovaginal endo and its worth reading. She has also posted other interesting reads on endo. I encourage as many women as I can to educate themselves on this horrid disease as sadly ot is very necessary.

For reference at age 39 I have just had a hysterectomy 4 weeks ago along with major excision surgery for endo. However the hysterectomy was not for endo but rather was for adenomyosis, a condition similar to endo but found within the muscles of the uterus walls where endo does not grow. Even so my surgeon only undertook what is known as a total hysterectomy (ie he removed my uterus and cervix which is really just the neck of the uterus) leaving my ovaries due to the associated risks of early menopause (eg cardiovascular disease, early dementia, osteoporosis). That being said a lot of the research indicates that even with ovary preservation they are likely to stop functioning 3-5years post hysterectomy so sadly I may still face early menopause. Whether or not I decide to take HRT if this happens will be another difficult decision I will have to face at the time as there are risks either way. So please do not rush into or be persuaded to have a hysterectomy if it is due to endo as you may regret it.

Best wishes, x

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Yes Endo and extremly heavy periods. It was an option given to me by consultant. Had laps done and several drugs over the years and the only thing that seems to help is by changing my diet, which I am currently doing. I wondered if anyone had any positive experiences or life and Endo after a hysterectomy as I wanted to do some research 😄

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Hi again, a hysterectomy will obviously resolve the heavy periods but as I said before unfortunately there is no guarantee it will resolve the endo pain if the endo itself has not been excised

thoroughly.

Furthermore a hysterectomy is a big op, a big decision and one that can't be reversed afterward! You have the concerns of early menopause and the risks that brings even if you preserve your ovaries and then there is always the worry of prolapse to consider.

Sorry if it sounds negative but I had a gynaecologist telling me a hysterectomy was my last treatment option for endo at the age of 32 and it should not be offered to women as a cure for endo when the research exists now to suggest it is not, x

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Can I guess that your specialist was based up north near Yorkshire and ask how you are recovering from surgery as I'm due to have surgery soon. Many thanks

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Yes it was Mr T! After the initial hiccups with the ovarian suspension & then unfortunately I got an infection I finally feel I'm on the right road to recovery! I find by the afternoon I'm quite tired and a bit sore - it feels like a massive internal graze. But I manage in just paracetamol until the evening then I take cocodomol before bed. I'm pottering around the house and managing a 15 minute walk a day at the moment. I think I would be doing more by now but my recovery was set back a bit with the infection. I am a bit more limited then I suspect you will be as I had a hysterectomy as well. I'm really hopeful for the future and am looking forward to the near future when I can take my dog for a nice long walk without all the issues I had before! Best of luck with your surgery. I do believe you are in good hands, x

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Thanks just trying to schedule it asap as I'm not feeling well. I had the investigative one last Friday. Such a nightmare he doesn't operate in London. I also need to have my uterus moved forward and may need a hysterectomy eventually as it may have spread into the uterus.

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Wow very informative, thank you for the info, I have adeno too and waiting for hyster I'm 33, on prostap and scared, this info makes me feel better/prepared! Thank you x hope you're on the mend x

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Hiya I had a subtotal hysterectomy last march which I asked for after suffering so much pain and heavy bleeding and clotting over the years and the fact that they had removed 4 polyps the year before. They left my cervix behind because it was stuck to my bladder and because I have terrible bladder issues they thought that by trying to remove it, it would do more harm. I am 40 too and I still have excruciating pain and have now been referred to a specialist at stepping hill as I had an MRI done since which has shown a lesion on my cervix and scarring on both ovaries sticking them to my bowel, which I also have terrible problems with. I'm now looking at more surgery and so would tell you you really think about hysterectomy as it isn't a cure for endometriosis. Push for a referral to a specialist that can give you the correct treatment. Good luck hope all goes well Heidi xx

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Thanks Heidi, sounds like you have really been through it. I wish you well for the future and thanks for sharing your story with me. I am waiting to go back to see the consultant so will carefully consider xxx

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Hi I had a full hysterectomy 8 years ago at the age of 36 and had 6 years pain free. However I'm now suffering again because the adhesions which were left round my bowel have developed and I had a Laporoscopy 3 weeks ago. They were attached to my abdominal wall. I'm on HRT and although the doctor have not confirmed the link there is research to say that the estrogen may cause the endo to spread. For the 6 years I had relief I would recommend a full hysterectomy because like yourself I was in some much pain and had stage 4 endo. I hope that helps in some way. Good luck. Julie x

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Thanks Julie, glad to hear you had 6 years free of pain. I'd do anything now to get rid of this intense pain. I hope you get yourself sorted again :) x

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I was going to wait a few more weeks before I posted about my hysterectomy, but as you have asked:

I am 47. I had a hysterectomy 2 months ago. I have history of stage 4 endo and fibroids. I have had 3 laps in the past to remove endo, the last one was just over 2 years ago. They said they had removed the endo and I was given a Mirena.

After that surgery I felt really bad. I kept expecting to feel better (I had experienced some improvement after the previous 2 laps) but I bled for 6 months, every day and for that time it was hell. OK, I didn't have excruciating period pain any more, but day to day life was grindingly bad, and I seemed to have low grade period pain every day, escalating some days to what I would have then called moderate pain. Honestly, there were many days when I couldn't face carrying on. They said they had removed the endo, and yet I was still ill. We checked the position of the Mirena, it was fine. I was told it was a mystery because there was no endo - implication being it is all in your head, dear... I could just about manage going to work, but there was no joy in life and I was so, so tired all the time.

I have had advice from various medical professionals over the years. The consensus from them was that hysterectomy was not a good option. Most of what I read on this board is anti hysterectomy and anti removal of the ovaries. However, I got to the point where I could not carry on as I was. I was sure my endo was back and everywhere.

I fought for another lap to remove the endo I was sure was back, and to have (on the advice of my new surgeon) a hysterectomy, including removal of cervix and ovaries.

I woke up after the surgery and threw up for 12 hours! Then I wanted to laugh, and sing and dance. I felt absolutely bloody brilliant. They offered me pain killers, but I had no pain - at least nothing that I recognised as pain in comparison to what I have lived with daily. I had never felt so good since this hell started when I was 13. I realised that I hadn't known exactly how much pain I was in before. The surgeon says I had adenomyosis but there was no point in having it confirmed by pathology now it has all gone, and he looked everywhere for endo and couldn't find any.

I thought I would be depressed afterwards. After my last lap and that mirena I was the most depressed I have ever been. But no, I felt great. Three weeks after the op I went to my GP and got a low dose oestrogen tablet. I still expected to get depressed, but no, I still feel great. We have a family history of breast cancer and osteoporosis, so I will need to make a judgement about the HRT as time goes on, but at least I can't now get cancer of the uterus, ovarian cancer or cervical cancer.

I love having balanced hormones, I love not being in pain, I love not crying every day. I finally feel like me. We've booked a holiday in the summer, and I am actually looking forward to it, rather than thinking about how I am going to manage my energy levels and the pain so as not to spoil it for my husband.

Best decision I ever made.

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Your comments made me cry memyselfi, in a sort of good way ;) I can totally relate to everything you said, I have a long history of endo and had a mirena in jan and I have adeno too I'm on prostap waiting for hyster, I'm so down I can't take it any more, I can't take the pain the guilt and not being able to live my life, I can't have any more children (I have 1) with or without my womb , so bring it on I want to be pain free!!! I want to feel how you do, I'm so pleased for you, you give me strength that there's light at the end of the tunnel, thank you xx

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Hi, I just wanted to add that I am not anti-hysterectomy if it is done for the right reasons and I'm afraid the research is clear now that endo is not one of them.

As the lady above mentioned, hysterectomy does have its place for conditions such as fibroids and Adenomyosis (both of which do effect the uterus). In fact I had my hysterectomy (but kept my ovaries) 4 weeks ago due to Adenomyosis & endometrial polyps and although still early days I don't regret the decision as already I notice a difference. The adeno & polyps were causing me daily nausea, sciatic pain, headaches, frequent urination (every 30 mins when I was active), very heavy and erratic periods and constantly feeling like I was carrying around a bowling ball in my tummy. All of these symptoms have gone since surgery but this is because I had good & thorough excision surgery for the endo & a hysterectomy for the adeno & polyps - it took my surgeon 7 hours to achieve all he has done!

For women who do not have conditions effecting the uterus then hysterectomy is just so unnecessary.

For endo the gold standard of treatment is good excision surgery by a BSGE accredited endo centre.

I'm sorry to harp on about this as I too know when you are suffering on a daily basis you're willing to consider anything. But the reality is putting yourself through unnecessary surgery that ultimately doesn't solve the issue will only serve to add to your problems.

Please have a look at posts by Lindle on hysterectomy and endo. For reference I believe she did have a hysterectomy in the hope of curing her endo & it was unsuccessful.

I wish you all the best, X

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I'm really interested that you feel it is so important to keep the ovaries. My surgeon discussed it with me, and I understand that once the uterus is removed they are likely to stop working anyway within a few years because their blood supply is reduced. He also told me that for women under 55, there is no additional health risk to taking HRT as against keeping the ovaries and after that the ovaries are just a cancer risk. I believe it is thought that it is hormonal imbalance and fluctuation, rather than just the oestrogen, that exacerbates endo, so HRT oestrogen doesn't necessarily aggravate endo and could actually be better - for me, the absence of PMT and all the associated symptoms is a big bonusl.

I am absolutely not saying that hysterectomy cures endo. I'd like to stress that my endo was completely removed before I had the hysterectomy, but that surgeon and the previous other two did not diagnose the adenomyosis, despite my womb lining being more than three times as thick as it should have been. I also think that the Mirena was a very bad option for me, so part of my hysterectomy decision was because I wanted the Mirena removed but couldn't face my horrendous periods again. I also had a retroverted uterus.

I read that only 10% of women with endo also have adenomyosis. I wonder if this is true, or if it is simply not diagnosed in most cases.

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Hi, the decision to have a hysterectomy with or without oophorectomy is a personal one and of course dependant upon individuals circumstances.

There is research to suggest that after hysterectomy with ovary preservation ovaries are likely to stop functioning within 3-5 years following hysterectomy. However there is also some research that refutes this. The fact of the matter is women's body's are complicated and there is still so much that is unknown.

Even after menopause or a hysterectomy with oophorectomy our bodies continue to excrete certain oestrogen's meaning that existing endo which has not been thoroughly removed during surgery or indeed even new endo may continue to develop.

Furthermore there is research to suggest other mechanisms other than oestrogen are involved in the development of endo, including evidence now to suggest it may be an autoimmune disease. This could indeed explain why some woman post menopause (either surgically induced or naturally) continue to suffer from endo.

With regards to my personal concerns with HRT, the risk of developing breast cancer is increased for women who are using combined HRT, and may also be increased for users of oestrogen-only HRT. The Million Women Study results suggested that women who are using combined HRT have double the risk of breast cancer compared to non-users. And if they use HRT for over 10 years, their risks are even higher.

The reality is, like so many of the drugs prescribed to women for endo, the side effects have not been ironed out and with new research new information concerning its use seems to develop.

From this viewpoint and given I like many endo sufferers have had enough drugs thrown at me I prefer to minimise the risks of taking these drugs whenever and wherever possible. If hysterectomy with ovary preservation gives me 3-5 years of naturally produced oestrogen then I personally would prefer this to putting something synthetic in body if at all possible. When the time comes that my ovaries stop working I will of course have to reevaluate my position and weigh up the pros and cons.

Please note I understand it is a very personal decision electing to have a hysterectomy with or without oophorectomy and each woman facing the decision has to ultimately make the decision that they think is right for them.

However, I know from personal experience and forums like this that the myth still exists amongst women and medical professionals that hysterectomy cures endo. Unfortunately this is not the case particularly if endo has not been thoroughly excised in addition to the hysterectomy.

Furthermore many women are still not undergoing thorough excision surgery by a BSGE accredited endo centre. Many women and their GP's aren't even aware of such centres. As such they are relying on general gynaecologists who unfortunately tend to lack the skill, training and expertise to (a) recognise endo in its many different forms and (b) thoroughly excise it. Therefore their symptoms continue and they are left with their gynaecologists telling them a hysterectomy is the last treatment option available to them as the endo has been removed when in actual fact it has not. Indeed this happened to me 7 years ago and I'm grateful I took the time to do my research and avoid the need for hysterectomy until now. And I've only had the hysterectomy now due to Adenomyosis and endometrial polyps that developed later not due to the endo.

I am pleased you found relief for your endo and that you are pleased with the choices you've made and the outcomes. I suspect the hysterectomy really served you well as in that it is a definitive cure for Adenomyosis.

I can say that the symptoms I was experiencing as a result of the adenomyosis have gone and I'm still only 4 weeks post op so I certainly do not regret my decision to have a hysterectomy.

It's just horrible to know that this is the only cure for adeno when I know there are women younger than me who aren't ready for a hysterectomy but their quality of life is being severely impeded.

As adeno can mimic other diseases including endo and fibroids I also wonder whether the prevalence of adeno is much higher than reported and, much like endo, it is going undiagnosed 😣.

I have definitely decided I am coming back as a man if there's a next time - women's bodies are just too complicated 😝!

Best wishes, x

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Thank you, that's interesting. I suppose at my age it is less of a difficult decision. Having ovarian cancer risk factors to take into account such as breast cancer in the family, being tall and of course endometriosis, helped me to decide that I'd rather take the small increased risk of breast cancer later in life (which again, I've been told will not be a factor for a few years) than the risk of ovarian cancer.

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Hi

I had a hysterectomy 4 weeks ago I also had my ovaries removed.

So far it feels like the best decision I have ever made.

I'm only 27 so I will be on hrt forever.

It hasn't been an easy recovery but not suffering every day really is wonderful. I have a life at long last! X

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I am new to this forum. After my last op my gynaecologist said that I can't keep having operations to decide to op for a hysterectomy. My family is complete and I am not yet 40yrs old. I have had Zoledex implants and I'm reading and reading what's my best options are but seem to get more and more confused. Keep ovaries/cervix or not?! Will it cure me or need more operations which I'm trying to avoid. I hate the side effects of Zoledex I am putting on weight, can't shift it, will it be like this after hysterectomy. No idea. I'm pleased that some of you are better for your decisions, some hope for me.

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