Is a gyneocologist right when they say they can not help me anymore as I have no womb, tubes or ovaries?

[Mrss25]

I’m reaching a dead end with my gyneocologist as they have discharged me, saying I’ve nothing left and they can’t help me now, and they don’t know what the left sided pain is and it can’t be gyny issue as I’ve had womb, tubes, ovaries and cervix removed . Does this mean I’ve nothing left for a gyny to help with?

[deemdiane]

Hi, I also don't have my womb, ovaries, tubes or cervix but recently (5 years after my total hysterectomy) I was referred back to gynaecology because the endo is bad again and I had an adnexal mass assumed to be an endometrioma.

Endometriosis is a gynaecological problem and just because you don't have the reproductive organs doesn't mean that they shouldn't investigate. Pain on the lower left hand side could be another patch of endo or a cyst so I would insist that they look into it properly.

I'm new to this site and hope this helps.

[Hidden]

Hi

Can't believe how you have been treaten. I would request a second opinion. I would not be happy about it. Hope you get sorted out. Xxx

[stevieflp]

Hi . . I sympathise with you and these comments are just what I have come to understand on my own endo journey and having had the privilege of knowing one of the top U.K. Endo consultants who has now sadly retired.

Actually endometriosis isn't specifically a gynae condition. This is where so much confusion and mis-treatment arises. It can affect the whole peritoneal cavity and even other parts of the body. It is lumped in with gynae simply because it is a condition that is hormone reactive and bleeds with the changing hormones. It is a separate condition in itself and you should be seeing an endometriosis specialist consultant and not a general gynae I would suggest.

I had stage 4 with my whole peritoneal cavity glued up and organs stuck out of place . . affected bowel , bladder, recto-vaginal . . way beyond the capabilities of general gynae who tend to see it as a period problem . . which is just one aspect / symptom of it and could be down to adenomyosis rather than endo with similar symptoms. The menstrual cycle is not thought by the experts to be the cause / root of the condition but rather a part of the overall symptoms as it is greatly affected by oestrogen. There was a theory of retrograde memstruation but this has never been backed up by scientific evidence. It is thought far more likely that endo is laid down in the gestation period and comes to life over time with exposure to hormones. I can't mention specific endo experts on here but there is literature on the internet written by them from their experience and research and left as a legacy from their work. One is from the USA.

Where you get a gynae who thinks a hysterectomy will cure all . . they are unlikely to be an endometriosis expert with an understanding that a hysterectomy only will help a condition called adenomyosis, which is where the lining of the womb breaks through the muscle wall which is a condition very similar to endometriosis. Only a biopsy can determine this 100% and which can only be done after a hysterectomy so can only be suspected with a bulky womb.

Endo grows outside of the womb, and around it, and can be anywhere in the peritoneal cavity. Hysterectomy therefore will not do anything for the endo other than that on the outside of the womb, which an expert surgeon can remove preserving the womb unless deeply penetrated. Also where endo is found on the outside of the womb it is likely to be elsewhere so, without excision if any other endo, hysterectomy in itself would not be the total answer.

My consultant, who is now sadly retired, said that the reason people think endo always comes back is because it was probably never all removed. Generally when all excised it does not come back but future symptoms are where remnants, however tiny, were left behind and go on to cause a flare up and this is why it is so difficult to treat and needs an expert surgeon specifically trained in this complex surgery. General gynaes do sometimes do excision surgery and will remove patches of seen endo, which may give some relief but any remaining endo could cause future problems . . perpetuating the view that endo always comes back.

Gynae also tend to dish out hormone suppressing pills that either mimic pregnancy or menopause . . Neither are a cure but may be a short term suppressor of symptoms and relief . . but not nice for a young woman to be put into menopause.

My first gynae told me that if I take the menopause inducing pills and find relief then that proves a hysterectomy would be beneficial. As it happens I did not have adenomyosis but had endo absolutely everywhere else in the pelvic cavity . . so had I had a hysterectomy and removal of ovaries I would not have been in a better position and their advice was not correct for my circumstance. That isn't to say it won't help some ladies if have adenomyosis or invasive endo of the uterus from the outside.

Actually menopause helps because it reduces estrogen, which can often be the reason for a gynae recommendation of ovary removal where the ovaries are functioning well and not damged . . Personally I would prefer to tackle this by looking into the effects of xenoestrogens which can be found in many products we use daily such as shampoos, conditioners, toothpaste, moisturisers, make up, household cleaning products, plastic in water bottles, in fact any plastic that gets heated up for food or hot drinks. I won't go into this subject here as I have written posts on it in the past. Suffice to say I have switched to using products that are free from parabens, phthalate, PBA's and other chemicals that cause our bodies to react as if increased estrogen. A blood test would not show this as it isn't actual estrogen but mimics it affecting estrogen receptors that react as if it is increased . . so I understand. Always worth cutting down on chemicals. Lots of great products out there now. Ovaries produce hormones well into old age that can still have protective benefits for the body, they are not just about reproduction.

Excision surgery is the best way to actually remove the problem of endo and that is generally best done by an accredited endo centre / endo consultant who has specialised in this type of surgery rather than a general gynae who has endo as a stringto their wide gynae remit of all kinds of other gynae conditions. Endo consultants usually start off as gynaes and then move on to focus just on endo and to specialise in its surgical treatment. Best to research your consultant and find out whether they totally specialise in endo and what their experience is.

I wish you well and hope you find the help you need.

All best wishes