Total hysterectomy - resentful

It's only a few weeks since my endo was diagnosed and I've now been advised to have a TAH due to fibroids in uterus, and removal of both ovaries to stop more endo growing ( & the right ovary is badly damaged by cyst anyway). Excising the endo alone apparently wouldn't stop the pain as fibroids would still be there and the endo would likely just keep growing back.

The consultant has said I won't be able to have HRT due to the endo - so I will have to undergo surgical menopause 'cold turkey' (I'm 42). Due to adhesions there's a risk of bowel and kidney damage which frightens me. Apparently I have scarring and haematomas all over due to old endometriosis and the consultant said I have probably had endo "for years".

I would do anything to get rid of the pain, but I feel shocked and resentful that this wasn't diagnosed earlier, when it could possibly have been arrested before the endo started to cause all the adhesions.

From my experience and reading other forum posts I do feel "IBS" seems to be a catch-all diagnosis by GPs (and not just for gynae issues!), as that's what I was always told my abdo pain was caused by (plus 'normal' menstrual pains ... 'normal' in my case included vomiting and feeling faint on the worst occasions but apparently that's regarded as normal). I just wish I had known more about endo as it simply wasn't on my radar when I was speaking to doctors.

(Apologies for 'venting' but needed to get this off my chest.)

If anyone is reading this who thinks they might have endo - could I just say, don't let your GP fob you off by saying it's IBS or 'normal' menstrual pain - insist on a proper investigation - I wish I had.

11 Replies

oldestnewest
  • I am in a similar position. I was diagnosed back in january and my disease is sadly now very severe - multiple large lesions, bowel involvement, everything glued together in a big lump on the right. It's so difficult trying to explain to people that I've been ill with it for years but I was always told I was fine. Things got really bad in late 2014 but I was told I had IBS, I was menopausal, I was fine. No-one would take it seriously until I started having to go to A&E with pain. It's suspected now that I've had it for years, but as I didn't have fertility issues (although I did have problems in all my pregnancies which apparently could well be due to endo) no-one was interested. When you've always had horrendous periods right from being a young teen, and every GP you see tells you it's normal, it is normal for you, so don't beat yourself up over that. The lack of education is shocking. The lessons at school, my mother, the period books, the biology lessons, the GP, none of them ever suggested that what I was experiencing wasn't normal and I had no reason to think otherwise.

    The first thing I would suggest you do is get yourself referred to a bsge centre if you are being seen by general gynae, and try all the drug treatments first. They can help to reduce pain and although it's not a cure it is really important to have some time to let this all sink in, to grieve, and to think about whether you are ready for a hysterectomy or not. I don't know if I am ready, TBH, but I do know that I'm ready to not feel as horrible as I feel now. I'm 39. I do feel really angry that I was left to deal with the disease on my own for so many years, but on the other hand, even if I had been diagnosed earlier there is no guarantee that I wouldn't have ended up at this point anyway. There is also an argument that earlier diagnosis means more surgeries, and the scarring from these can be really problematic.

    I have been told that I will need HRT post hyst as the risk of heart disease and osteoporosis is far more problematic than the risks of using the HRT. TBH I think its really cruel of a surgeon to tell you you'll just have to deal with a surgical menopause and that's it. Please get a second opinion.

    Hugs. x.

  • Lots and lots and lots of hugs for you both x x x x Take your time and make your own decisions. It Is a horrible disease. It's no consolation but i even saw gynaecologist Consultant in my 20s with my Problems (i am 42 now too) but Endo was still never considered apparently at the time it was perceived as an oder womans disease and just not on their Radar.

  • Thank you both for replying!

    Joreilly, your history sounds quite similar to mine - I was only diagnosed after A&E admission, and then only because the docs thought it was appendicitis and did a laparoscopy to remove my appendix - appendix was fine but the endo was identified so they brought a gynae in. You've hit the nail on the head in saying you can just be conditioned to think pain is normal; I kept on upping the painkillers over the years without really thinking about it, then my husband saw me taking 6 ibuprofens in one go and was horrified. I just wish I had been more assertive ...

    Starry, I think you're spot on in saying the disease isn't on the radar - it was never once mentioned by any GP I saw and I have to admit I had a hazy and totally incorrect idea of what it was (I thought it was to do with losing parts of womb lining rather than womb growing outside) so I never thought to suggest it - just accepted the IBS/dysmenorrhoea explanations.

    I'm going to see a BSGE specialist before I decide what to do. I'm conscious that the worse the bowel adhesions get, the more chance of bowel damage (I have been warned about having to have a colostomy bag) so don't want to leave it too long but I want to make sure the hysterectomy really is the best/only option.

    Thanks again both for your support.

    H. xxx

  • Hi

    I'm so sorry for what you have been through. I had thirty years of 'IBS' and it was only after several tests had showed no abnormalities and the day after my elective total hysterectomy and oophorectomy that they informed me that I had Stage 4 endometriosis with everything stuck together on the left hand side with severe adhesions.....even my arrogant consultant was shocked by what he found. My sigmoid colon and womb, tube and ovary were stuck together with my ureter. No wonder I have struggled to go to the toilet all these years.... I see that you are going to a BSGE centre. I'm glad about that. No general gynae should be allowed near endo! Demand expert help!

    Please check to see if you can keep your healthy ovary. One thing that is often overlooked with surgical menopause is that the ovaries keep producing a good supply of testosterone probably into old age. If you can keep one ovary you may feel better. The gold standard is total excision of the endo (the bad guy) and preservation of healthy ovaries. Not sure that even regular BSGE centres do it. I don't have private medical insurance however I would have gone for total excision if I had the money and if I had known about the endo in the first place. Take care of yourself Heloyse.

  • Hi, I was in a similar position. i had a total hysterectomy - uterus,tubes,ovaries and cervix out and endo removed in Feb this year aged 44. Consultant put my on Livial hrt for 6 months then changed it to Estradot. Was told I need it to protect bones, heart etc. Before op I went into a medical menopause with prostap injections with no hrt backup and I felt awful - hot flushes, insomnia , brittle hair, joint pains etc. Feel much better on hrt. Please message me if you need a chat. X

  • Hi there. I had hyster in Feb 2015 due to fibroids, adenomyosis, and endo, at 42 and was put on livial. Then saw menopause clinic and changed to Kliovance or evorel conti depending on if you like a tablet or a patch. Don't get fob off with being told you can't take anything, specialists in the area know what to prescribe to help you.

    Definitely see a BSGE surgeon as I didn't and I'm in worse pain now than I was. Just have the benefit of no heavy bleeding.

    You may want to join a new facebook group called endorevisited UK as you can discuss surgeons on there as we can't here due to it being charity run.

    facebook.com/groups/1148144...

  • Hi heloyse, I had so called 'IBS' diagnosed when i was 19 ,now im 43,was diagnosed with endo 2 years ago after a ruptured ovarian cyst,like you i went to A/E and they thought it was appendicitis too,it wasnt until i was on the operating table that they realised i had a ruptured endometrioma...like you say ibs seems to be a condition that gp's love to tell everyone, i suppose its easier for them to fob us off with that instead of actually finding out the problem.looking back i had endo symptom for years but nothing was done. If we had been diagnosed with endo sooner how many of us would have been spared so much pain and heartache. Have my first lap booked since my surgery for 21st nov, at bsge centre...after my local hospital gynae just wanted to do a hysterectomy without any other treatment. As i dont have children i refused the hysterectomy,so he discharged me,i then asked my gp to refer me to a bsge centre...feel that its hard enough to have this condition but we also have to fight for treatment from the nhs too.

    big hugs x

  • Hi attummi - It's unbelievable that your consultant just discharged you like that because you wanted to preserve your fertility. That's really awful, and sounds as though they were looking for an excuse to get you off their books. The consultant should've referred you to BSGE himself if there was nothing else he could offer rather than leaving you to go back to GP. Given the effect endo can have on fertility, there's no excuse for not having a proper treatment strategy in place where hysterectomy is simply not an option. I do hope your lap goes well on 21st November!

    Hxx

  • Thank you for your support Heloyse,yes it felt like the consultant strung me along for 18months,took 6months each time to see him on two separate occasions and both times i saw him,he just kept talking about a hysterectomy,even tho i was adamant that i didnt want one. he didnt even discharge me face to face just sent a letter, and then didnt offer to refer me elsewhere,even tho i told him all my symptoms and severe pain.when i asked if he could refer me to the pain clinic,he said to go back to my gp for pain relief. Hope your appointment comes through soon at the bsge centre, and you get some proper treatment too.

    take care x

  • Hi Heloyse, I'm two days post op.

    I've just had all of my Endo excised and fibroids removed. I'm 35 and have no children so hysterectomy wasn't an option for me. In fact it wasn't even suggested by my specialist, who was excellent.

    I had an 8 hour surgery on Thursday in which he removed two bilateral endometriomas, separated out my ovaries and tubes and separated my bowel from my womb. I also had two very large fibroids removed (the biggest was 12cm).

    It can be done! If you don't want a hysterectomy, I'd seek a second opinion if I were you. Feel free to PM me if you'd like to know more.

    Best wishes to you.

  • Thank you for so many helpful replies. I had a gut feeling that I should try to spare at least my healthy ovary, and this has confirmed it. The sort of surgery discobec had would seem a better initial option if my case is suitable (which I'm hoping BSGE might advise on) and if I do have a TAH, HRT would seem to be a better way forward than full-on menopause.

    It's hard to think straight when you're in pain - when it's at its worst I do have an urge to say (or scream!) 'take everything out' and that may end up being the best option, but I do feel I should try other options first; and as everyone has said, take HRT if I do have to have both ovaries removed.

    I've decided to see whether the consultant would be prepared to remove only the right ovary in the first instance, as that's where my constant pain seems to be centred and where it's most excruciating during an 'all over' pain attack. I'm aware that might mean more surgery later on (the thought of more than one op, each with its own associated risks, is one of the things that I see as positive of a single TAH) but I really don't feel I should commit to having everything out if I'm only 50/50 on whether it's the right thing to do.

    Thanks again for so much support and helpful advice

    H xxx

You may also like...