Endometriosis UK
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Newbie here & looking for answers. (Arnt we all!!)

I will try keeping this as short as possible!

My pain all stemmed from having an ectopic in 2001. My left tube had to be removed as i had lap & dye and they discovered my remaining tube was completely fused together so unable to conceive naturally.

I have had chronic pain for as many years as I can remember and was fobbed off with IBS for many years. My work has suffered as I've had so much time off I nearly lost my job at one point.

Eventually after basically begging for the hospital to give me another Laparoscopy (for 9 yrs) they finally agreed. I have fibroid, pcos and possible endo (she said she couldn't see any but it's not always visible to the naked eye) during this Lap they found my bowel was fused to my uterus with adhesions, which were divided whilst I was under.

Finally I felt some relief and was pretty much pain free! I then decided I was ready to find out about IVF as we were desparate for a child and time was ticking.

NHS refused me as I was too old (34!) In the end we did an egg share program amd we are now blessed with our 2 yr old angel who is currently chatting away playing with her chalk board! My little miracle!

Anyway, once my daughter was born (I had kind of forgotten about all my pain as I never got any of it whilst being pregnant either) as soon as my first period arrived, BANG, that was it. It hit me like a ton of bricks. Same pain that I remembered so well had started affecting my day to day life again.

I have asked to be refered to hospital again and am currently waiting for a date.

What I would like to know is

* should I ask for a hysterectomy?

* will this even help?

* will they refuse me?

I am 37, cannot have children naturally (and no way we can afford another cycle of IVF) and am in so much pain I'm dosed up on codeine for two weeks out of every month. My sex life is non existance as it hurts so much during and after. My whole stomach bloats out and it actually feels all bruised and like it's going to fall out.

Just wondered if anyone has any advice because I'm desparate.

Many thanks in advance guys

4 Replies

I wasn't lucky enough to carry my four pregnancies to term but did have similar issues such as the bowel stuck to the uterus, ovaries pulled down to the pouch of douglas and encased in a chocolate cyst alone with the appendix on the right side. Sex was painful but I put up with it.....

Anyway, after all that and IVF attempts, etc. I decided at 31 to have a hysterectomy and oophorectomy (both ovaries removed). I had to pay for it because they were not keen given my age but agreed that the damage internally was severe enough.

I had this in December 2004; it took about 4-6 months to recover fully from the surgery which took several hours; I was then PAIN FREE for a few years until 2009 when I experienced 'niggles' of pain which were easily alleviated by aspirin and/or ibuprofen. By 2010/11 it had increased in severity and frequency but was what I termed at the time 'normal period pain'. By 2013 it had become similar to pre-surgery levels with both pain, mood swings, depression, etc. although none of the hospitals would agree to surgery given I've had 12 already including to remove the ovaries and uterus.

Now I am disabled, relying on a rollator/walking stick to get about; I work full-time in a lower paid job despite my qualifications/experience (I'm a criminologist who used to work for the government) albeit within policing. This is because here I have some flexibility and can work from home occasionally if I'm unable to get into the office due to pain. I've not had sex since 2012 (though some of that relates to other issues) but for instance, when the registrar tried to put the speculum into me the other week for an exam, she couldn't get it in because I was crying with pain.

I live on morphine, tramadol, amitriptyline, naproxen, hemp oil (which is the legal version of cannabis), co-codamol, etc. now and feel like a bloody zombie sometimes. I'm very depressed and often think about ending it all; if I had the money, I would travel to Switzerland where it's legal but I no longer have the earning capacity; were it not for my three cats, I would probably do it here.

Don't get me wrong, I do not regret having everything out; I suspect had I remained where I was living and remained on the same diet/exercise regime, my symptoms would have been held off for even longer than they were (I basically ate all organic foods and swam almost every day). I would do it all again but it doesn't cure the condition at all - they may refuse you, depending on what surgeries you have had already and whether there is any other treatment which may be more productive.

Not to sound awful but at least you have managed to have one child although I know it would be lovely to have more. My mother was told she'd never conceive again after my sister but seven years later I came along (she too had severe endo). I always managed to conceive but after four miscarriages gave up.

Hysterectomy is not always helpful although I know many women who have been lucky and had no return of symptoms at all; some are like me and get a period of time when they have nothing but then it comes back and others are unfortunate to get no relief at all.

I hope this helps - probably not - but at least gives you an idea of (a) how having the uterus removed doesn't always help but can provide some alleviation of symptoms and (b) what hospitals say in relation to this 'drastic' surgery.

Good luck.

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Hi - at the point that your bowel was found to be stuck to the back on your uterus you had what is called an obliterated pouch of douglas and should have been immediately referred to a specialist endo centre for suspected rectovaginal endometriosis. It is very likely that you have deep endo there and I'm guessing you haven't yet been given a rectovaginal exam (fingers up the vagina and bum at the same time). This should be standard practice for feeling for 'nodules' that are usually present there. You also need an MRI scan. A hysterectomy is not a treatment for this as endo can continue afterwards, especially if your ovaries are retained.

Click on my name and have a look at my post on rectovaginal endo to see what you identify with and the one on how to find a specialist centre. You need a referral to an endo centre as soon as possible - where in the UK are you?

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Thanks ever so ladies.

I know I am so blessed to have my daughter. Worked first amd last time I would of been able to do it. I'm so so lucky and never take my daughter for granted. I'm so sorry Maria that it never happened for you. I admire your strength as I know for sure I probably would not even be here today had it not of worked. I was on a very dark place prior to finding out about IVF egg share.

I called the docs yesterday and I have screen shot the info above to read into procedures that I can read into. I am being refered not to the hospital I who did the op on me last time (women's clinic always only ever on a monday and just too bust on a monday at work to get there) so I am going back to my local hospital and hope I have more luck than before there considering they should realise I wasn't just harping on about all the pain I was in for nothing. I'm hoping they will see that they should of just given me the Lap and the division of the fibroids in the first place. Instead I was begging them for the best part of 9 years to which they refused.

Thanks for replying ladies, it was easy in my head, tale it all away amd obviously there wouldn't be anything to hurt anymore.. I was obviously wrong!


P.s I am in Buckinghamshire amd had to go to the women's Oxford clinic who were the only ones to take me seriously


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