It is endrometriosis

For a good while I had pain lower right side every week but not every day. Scans did not pick up anything so I had a diagnostic laparoscopy last Monday. They found endrometriisis on outside womb bladder side towards the right They treated this as well as taking a biopsy from inside my womb & fitted coil. 5 days on from surgery, I am still tender & tired but ok. Surgron suggested I take the contraceptive pill as well as the coil. A good diet & cutting back on gluten can help with endrometriosis I believe. I hope this has fixed things as I know endro can return.

[StefaniaJW]

I don't understand. Did they just perform a biopsy, performed diagnostic/explorative surgery or performed complete excision of all endometriosic lesions?

Pain that comes and goes on the sides and that doesn't show up in scans could be associated with adhesions rather than cysts.

Please provide more information so that I can try and advise you better.

In the meantime, yes, going gluten free can help, but it's not enough.

You need to cut out all processed and fried foods, alcohol, preferably all caffeine, all refined carbs and eat plenty of raw and cooked vegetables, fruit, nuts, fish, some free-range eggs and grass-fed meat are ok too. Drink green tea and non-alcholic beet kvass instead of coffee. Drink plenty of water. Make sure your vitamin D levels are in check (low vitamin D can increase inflammation and make endo grow faster)

[Hidden in reply to StefaniaJW]

Yes, surgeon took away some endo lesions as well.

[StefaniaJW in reply to Hidden]

SOME endo lesions is not good enough. Clearly that laparoscopy was either not meant to remove the disease completely or the surgeon was not skilled enough.

I would immediately get referred to a BSGE centre or, even better, a Nancy Nook surgeon.

Getting surgery done right the first time with endometriosis is PIVOTAL given that the more surgeries you have, the higher the chance to develop adhesions.

Unfortunately it does sound like you might have to undergo surgery again in the near future so please make sure your next surgeon is top-notch.

Please contact me privately if you want names of truly experienced and well-trained surgeons.

[Lostintransit in reply to StefaniaJW]

Hi there,

I was interested in possibly having some names you may have please? I have a mr penketh in Cardiff .

I’ve had 3 laps but none were specialists. The first surgeon was a lovely woman who did my first surgery, then along with a 6 month course of zoladex, tried add back but had some type of allergic reaction to it, my throat closed up, the Mirena which was agony and was removed after 3 weeks then a high daily dose of depo tablets which my body also rejected. None of this happened until after the zoladex. In the end she said she suspected I had Adenomyosis and then left the hospital where I was then seen over time by 2 male drs who told me it was in my head.

I saw on another post where you mentioned, I think the word you used was an engorged cervix and that it had been linked to Adenomyosis. I was told I had a “fleshy” cervix which was cauterised.

Now though I’ve not had a period for over 2 years, FSH, oestrogen, prolactin have all been not right for the last 4 years. If I’m honest, after the last two drs I saw, I lost hope and haven’t gone back since. I’m pretty sure I’m now in full menopause after what I believe was peri menopause for 3 years before that because I lost my mind and have every physical symptom. But it definitely has eased up in the last year and half but I’m pretty sure I’m menopausal. I just do not know where to turn because I can’t take HRT. Been told I need an endocrinologist report but I know they’ll suggest hrt which is then just been a waste of everyone’s time.

I’d really appreciate any advice you have. Thanks

[StefaniaJW in reply to Lostintransit]

Yes, I'll send you a PM