Well on Friday I go to see yet another gynae at my local hospital. The first recommended the mirena coil as a "solution", great, eight months later - no change in symptoms with the addition of abdominal cramps, the second recommended a lap, lap done, heart stopped on table, brought me round and said they'd found "nothing but a fibroid" and constipation (amazing that considering the amount of codeine I take....) and discharged me. My GP is still convinced it's sciatic endo and wanted to refer me back for hormone therapy. So, I've spent the last 10 months trying everything from herbal medicine, diet to acupuncture...until I've finally admitted defeat and I'm off back to the Hospital.
TBH I'm more worried this time, at the risk of TMI there's now also a lump by my cervix which I suspect is a fibroid rather than a cyst, plus really don't want to go on hormone therapy, I've read so many negative experiences, nor do I want another GA and lap after last time...
Rock and a hard place, can't go on like this, but don't like the treatment options.
Sorry for the moan, just wanted to sound off with people that might understand :), plus I'm on my second glass on wine, which I know I will regret when I wake up in the night in pain because my bladder is full.......sorry moaning again...xx
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thedogsmother
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I didn't realise you could get sciatic endo! I am due my 1st Lap in Oct but have just had a scan on back/neck due to nerve pain, numbness and tingling all in lumbar, vagina and left leg and arm. You've now got me wondering!
My symptoms are the same too, stomach cramps, cyst pain, bowel and bladder problems, worse during periods and I was recommended, like you, the Mirena and also Zoladex/HRT but refused them as my emotional state was already in a mess, this was before being offered a Lap (worrying about this).
I sympathise with your plight it can be exhausting coping with the pain let alone trying to make the right decision for yourself and you have already been through this trauma before so know what to expect, you poor thing. I hope everything goes well whatever your decision and keep us up to date.
Really hope you're feeling better. It's difficult trying to unravel the minefield of information out there and make the decision for you. I always felt like the doctors had an agenda. Do you have anyone who can go to the hospital with you? I found that when I had someone who sat in on the appointments with me, they were much more likely to explore options.
Hi - I am really sorry for what you are going through, having been there myself, and it is a minefield like you say. The below, whilst it does not specifically address your issues, it is a summary of all that I have come to understand on my journey and it might help you.
I was offered Prostrap, hysterectomy and oophrectomy for widespread endo that was everywhere. After having researched, I rejected Prostrap because I already felt I had hormone issues and did not want to add to that chaos, plus I saw that it was only recommended for six months - and I could not really see the point in that as I was looking for a long term solution, not a temporary one - then what - back to square one before too long!
I rejected the hysterectomy and oophrectomy because I read that a hysterectomy is only useful if you have adenomyosis (endo actually in the muscle of the uterus), heavy periods, fibroids etc. not as a cure for wider spread peritoneal endo - how was a hysterectomy going to help the endo that I had everywhere else! Had I had adeno or heavy bleeding or large fiboids, I would not have been against a hysterectomy for the right reasons, but it would have been necessary to have all other endo elsewhere excised for the op to have been successful in eradicating endo. My consultant told me you can never be 100% sure you do have adeno until after a hysterectomy and results of biopsy - it can only be suspected by symptoms ( apparently, the type of pain you get from peritoneal endo is different to that for adeno but when you are wracked with pain it can sometimes be hard to distinguish that). It can be suspected by an enlarged thickened uterus.
Again, following reading what the experts think, I also could not see the point in removing ovaries that we do need into menopause and beyond as a means to reduce eostrogen with the outdated theory that it will starve endo if the estrogen supply is removed. Then those consultants who advocate this as a suitable treatment for endo, usually give you add back HRT including synthetic estrogen! It is different if the ovaries are no longer functioning or if something like ovarian cancer is suspected.
It is now known that endo is capable of producing its own estrogen supply, plus we get xenoestroens (chemicals which mimic the effects of estrogen in the body) from the myriad of chemicals we use in toiletries, cosmetics, water supply and plastics that we are daily exposed to and these xenoestrogens are processed and elimiated via the liver which is often not able to deal with it all and so it is then stored in the body. Forward thinking circles now believe this is really what has caused women to have excess estrogen (along with certain types of contraceptive use etc) leading to estrogen dominance (which is implicated as a likely contributory factor to endo and many other female (and male) problems). Why not cut down on exposure to xenestrogens by switching toiletry brands etc and endo diet cutting out caffeine, alcohol and other toxins so that the liver can better do it's job of eliminating estrogen rather than storing it to see if that helps, before something as radical as removing ovaries. This is why the endo diet helps as it cuts out things that the liver has to struggle to process. Have a read of Estrogen Dominance by Dr Michael Lam and Stop Endometriosis Pain by Dr Andrew S Cook.
There are several theories as to the actual cause of endo, one being retrograde menstruation but this is increasingly being seen by the experts as being the exception rather than the rule. The dominant theory now is that it formed at the gestational period and activated at the onset of puberty by hormones, exacerbated by other factors such as xenoestrogens. It is also thought to sometimes occur during caesarian section if uterine material is left in the peritoneum. If these latter two theories are correct, it does mean that if it is all removed, it may not recurr. They key is removing it all.
I was fortunate enough to have had total radical excision 2 years 8 months ago by one of the leading lights in endo surgery where the whole peritoneal lining was removed , had endo removed from the Pouch of Douglas (recto/Vaginal), utero-sacral ligaments, shaved off the bowel, shaved off the bladder, diaphragm, ovaries resectioned to remove endometriomas. I might well have had adeno as my uterus was slightly enlarged but I decided to have all other endo removed first and then see if I still had pain, in which case it would have been highly likely to also have had adeno along with peritoneal endo. Turned out I was fine once all the rest was removed so I did not then undergo a hysterectomy.
Most surgeons do excision surgery by removing patches of endo. This is far superior to drug treatment or laser treatment, although laser is appropriate in certain circumstances. However, If you only have patches removed, whilst it will provide a good deal of relief, there is also a likelihood of further patches becoming problematic and the need for further laps over time. This is what fuels the idea that endo is not curable and always comes back. It is because the surgeons generally do not remove it all! If the whole peritoneal lining is removed and all other endo removed, then this is a much better outcome as further surgeries then are not so likely. There are actually only about 3 or 4 endo consultants in the leading field worldwide and they advocate removal of all endo, not just dealing with patches here and there.
Personally, if your consultant is the gynae at the local hospital (I am just assuming that might be the case as it often is), I would ask for a referral to a specialist endo consultant surgeon at one of the accredited endo specialist centres rather than see the local gynae. Not easy as there are unfortunately too few endo specialists. An endo specialist would have know about sciatic endo. Also the mirena is a way of helping with pain if it suits but it certainly does not get rid of the endo - only excision surgery can actually do that.
I certainly now am more mindful of the chemicals in shampoos, conditioners, body lotions, bath and shower gels, make-up, washing powders, washing up liquid, household cleaning products etc and, in order to do justice to the work my surgeon undertook, I now use less toxic products which are widely available , including feminine care without bleaches and radons etc. It might sound difficult but I switched gradually and I am not obsessive about it but the more I read about these xenoestrogens and other chemicals, the less I am inclined to bolster the bank balances of the pharmaceutical companies that use them as cheap ingredients. Eventually, hopefully, those companies will have to bow to demand and alter their ingredients as more people become aware of just what it is they are being sold.
Thank you all for the replies, especially the info.
I'm in a more positive place today and trying to keep my mind open to see what Friday brings. The main frustration is that it's always "we'll try this now see if it helps..." never any answers or solutions...
Angie/Astrogirl, please don't worry about the lap, my experience was a rarity I understand, and in truth I knew nothing about it. I hope you get some answers TDMx
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