Confused no endometriosis found

Hi all

I had my first Laparoscopy yesterday after a year of investigations etc.. I payed for a private gynecologist as was at my wit's end in becoming well again. I had gone from a healthy young (41) lady, active/sporty to since having Mirena Coil fitted last year (perhaps coincidence), to developing Vitamin D deficiency, Fibromyalgia, Urticaria/Angeodema to all sorts of pain having ovarian cysts (disperse and go away) I understand this isn't life threatening, but like you all, just want answers. To now having heard that my endometrial wall had thickened. Was given HRT and told I may have Adenamyosis even though this wouldn't show on MRI(correct like every other test) to now (before-)& after Keyhole yesterday with constant pain in my left which stops me from sitting/laying down with huge pregnant like bloating, to have nothing found on Laporoscopy, and told my follow-up will be 2-3 months. They took biopsy??????? Not sure if that can reveal anything??? Am soo exhausted and drained. Fed up and back to square 1. Have had Colonoscopy/Gastroenterology and they wouldn't give me a Capsule Endoscopy and put my problems down to IBS. I've got rid of my business to remove stress, on a Candida diet to aid bloating and paying an Osteopath to help etc... Nothing is helping, does anyone have similar experiences???? Am really interested please - sorry for long post! X

7 Replies

  • What did they take a biopsy of?

    It might show malignant cells, bloating in the number 1 sign of ovarian cancer which goes undetected.

  • I'm not sure as I just wanted to get home. Was soo confused and traumatized. I suppose I just have to wait. The just said they took a biopsy and she didn't really say what they could find as everything seemed normal in their investigation. Thankyou for your response x

  • Hi I know you went private but was this at a BSGE centre?

    Even a private gynaecologist really isn't good enough as they are still just a general gynaecologist and deal with all sorts of conditions . At a BSGE centre they specialise in endo.

  • hi thankyou for that, I appreciate any input on this help! Unfortunately I only had private consultation and then this aided a quicker route than pure nhs as I would still be waiting now. I couldn't afford private investigation. But would pay if they could gaurantee which examination would reveal answers. I have started paying into benindon and am waiting till February to try using this as my existing conditions now rule out any insurance.

  • Sorry to hear you're feeling so rubbish. Is your pelvic pain cyclical or constant? I ask as it may be an idea to start noting what type of pain you have. I'd also call and ask for biopsy results and find out what the notes were on your surgery. The gynaecologist should've been able to tell if you have adenomyosis and also an MRI can show the thickness, mine did. I think the other lady is correct, you should request a specialist. Endometriosis is a tricky disease to spot in some people. Also what type of cysts have you got as endometriomas are (I think) a sign of endo'. Although like you stated we all get cysts come & go with no problems the majority of the time. There are so many things it could be but they need to start ruling things out for you. Get your results and get a specialist. Wish you luck x

  • aaah :) thankyou for your shared words of wisdom... That helps. I called and got some notes. The only thing written was pipelle biopsy taken. I am suffering a bot as I'm getting cramps like before due to re-insertion of Mirena Coil they wanted to try me on again. I asume a small amount of pain is normal from this procedure. But I do think the coil is causing more pain on top if what isn't found yet. Just praying for answers in 2017 x

  • Hi there, I just wanted to say not to worry too much about the biopsy. A lot of hospitals do it as a matter of course. My specialist didn't during my latest surgery but my non endo specialist gynaecologist did do a biopsy when they operated last January. It was absolutely fine but they wanted to cover all bases. I hope you get some answers. You do need a specialist not only a BSGE centre (that covers all gynae) you need a specialist at a BSGE endometriosis centre. They're listed specifically on the BSGE website. Theres a list of BSGE centres but also a list of BSGE specialist endometriosis centres. I saw mine after my op in January at my local hospital when they found I had severe endo. I researched found the nearest endo centre and paid privately initially, then the local hospital referred me back to him on the NHS because they weren't skilled enough to do the surgery that I needed. Not many Gynae specialists seem to realise that they're not experienced enough. You have to have one that works on endometriosis all day every day. Very best wishes x

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