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.
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Heloyse
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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.
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.
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 just reading yr post on prostrap I was same as you before op was on prostrap with no hrt I had last injection in June an do not now how long this is in yr system am now 5 weeks post op hystrcomty an tubes removed x
Hi, I hope you recovery is going well. I had my last Prostap January 2016 then my total hysterectomy February 2016. I think the prostap lasts 1-2 months before it has gone from your system. I might be wrong though. 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.
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.
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!
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.
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.
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
hi trouble is everything with getting the effective treatments. I was extreamly in pain after my full hysto with ovary removal like 1 year and a half before i found some one who revealed i had a masssive knot of adhesions . It still didnt stop the pain not after 5 months , i dis covered if i take little bits of HRT no wherenear my doseim reasonably ok no nightsweats almost human but i was disgnosed first before this as IBS what a cover up. i think someone messed up somewhere or its that endo remains on my bowel . Many are reluctant to reomve it from the bowel due to perforation or avoid nerves. I actually saw endo being removed from the sciatic nerve in australia amazing. i feel better but only becausee of the minimisation of HRT tibolone. No one beleives me . I took it on zolodex which i had for 2 years and i felt completely well on th efull dose . its dropped a bomb on my career still sniffing whether im up to it loads of crap and a picky boss. I have to go 2 years without 1 day sick! dr prissy about my codeine which i need still along with ibuprophen and paracetamol. I quit the tramadol (very hard twice but at least thats one done as doctors took it off as they labled me as a junkie from day one! i took some zoplicone (not from doctor ) and had such horredous withdrawl this was together as the tramadol withdrawl. They wouldnt admit me. I felt i was dying couldnt stop being sick. My brother wouldnt pick me up cos i couldnt get home in this state , he said no ! i was hit in the heart really, eventually they admitted me i said please juts 48 hours to monitor me then i;ll go. I lay there mum turned up thinking i was a junkie too, she sort of understood and was more annoyed that she didnt want the shock of a phonecall of another daughter in hospital. My sister died recently from alcohol withdrawl but she did more than most took me home let me lie there as long as i wanted asked if wanted food , eventually coaxed me into a shower. Another couple of days i picked up i felt hungry first time after like 9 days . I went home soon after that as i needed to get out. She even went and got my cat , so was a bit anoyed that i wasnt staying , wasnt quitting my job etc confessed my debt was alot more than i said and the drive was miles everyday and i need to just collapse and sleep after its so draining. Ive gone home before eventually i moved out 3 timesi think . She says some demeaning things sometimes and asked me for rent in advance which was £200 20 years ago , i was again hurt and i started serious arrangements to put a 2000 deposit on a house and she came upstairs and kindly gave me the cheque to help me. I felt sad then. She just drives me mad after a while as well but i might have to home cos of money and abuse at work union helping me but its incessant. My memory isnt good cos of meno pause and the damage from the drugs but they re hardly being sympathetic. If it was cancer which i compare it to they;d be all nice to me bla bla . Me Im seen as just soft. Justgetting it accross to my boss was hard work - a) he didnt know how high up your bowel was and that it can appear on many organs . He had the gall to say "ah but you said it was up here like your stomach " i literaly enlarged and cut and pasted a diagram which i then heldin the correspondance with my own and said there is the bowel - see how high up it is. Anywaygood luck keep changing until you get the right consultant i found seeing a private one once about £170 he could put me back in the nhs system to be treated by him on nhs he wrote to my gp quite sternly that i should be re examined given the obvious pain i had and still have , Treouble is the op took so long i had to go back to work first as i wasnt allowed of any longer without getting sacked. I still havnt had it as i moved it , to seee how things panned out now i seemed to have hit the button with lowering HRT. Good luck hugs xxxx
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