Waiting for biopsy results...: Hi all, Its... - Endometriosis UK

Endometriosis UK

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Waiting for biopsy results...

budasti
budasti

Hi all,

Its been a while since I last posted as I've has SO much going on! I eventually had a laparoscopy (after basically refusing to leave without a referral for one!) The original gynaecologist was convinced it was not endo and said when I asked "If you're sure it isn't endo, what else could it be that would explain the intensity of my pain", and I quote her on this "It's probably just pain for the sake of pain"...Was not happy with that as I was clearly not being taken seriously, even after multiple ambulance rides to a&e as the pain was so incredibly awful!

So anyway, I had my laparoscopy last July, and they said they had found what they thought was endo in the pouch of douglas and removed it all. Also said I had a very rounded and 'globular' womb, which apparently nearly always means a diagnosis for adenomyosis. They also found a nodule on my cervix, which appears normal, but they took a biopsy. They also took another biopsy off of my cervix as they said I had excess cervical tissue, which is slightly abnormal. The last biopsy was taken of the suspected endo, just to make sure it was that and to confirm a diagnosis.

I have been put on a POP (progesterone only pill) as they said it should stop my bleeding pretty much all together, as that's the main reason for my pain, and it should help with endo symptoms too, and it has truly worked wonders (which is also annoying as the 6 years I have been suffering with pain, trying various other pills, I was told that the coil was the only option left!) Although now my pain is gradually coming back, and it feels like I am living with awful cystitis pain every single day! All the urine samples have come back negative to an infection, and as they did a cystoscopy during my laparoscopy, I know my bladder is healthy, so it has to be gynae problems again!

I have now been waiting nearly 8 months to here anything about my biopsy results! I found out I had no follow up appointment with my original gynaecologist, as she discharged me from her care as soon as she referred me for my laparoscopy, and just after Halloween (after no results still from biopsy) had a letter through to say I had an appointment in January to see the gynaecologist who did my surgery. That appointment got cancelled, I rearranged the next as it was a day and time I simply couldn't do, and now the appointment is in June, 11 months since my laparoscopy and STILL awaiting results.

Sorry about the ranting! Its just ridiculous for anybody to have wait this long to have a diagnosis of an absolutely crippling disease that need a proper treatment plan. I have done ALL the leg work, phoning my doctors every week for any news, phoning secretaries at hospitals to find out what is happening, and writing letters saying the same thing. I had ONE missed call from the lady who did my surgery, last week, at 5:30 pm, whilst I was still at work, and no message left, and after talking to her secretary, she said a letter would be sent out to me asap, although, guess what, still nothing!

I'm also having my first cervical smear today, as I'm 25 this year, and hope to God it shows up all clear! It does make you worry!!!

I'm just hoping someone else out there has been through the same thing as me, and has maybe had a successful complaint procedure as that's what I feel I need to do.

Thanks for listening!

2 Replies

Hi Hun. Yes you definitely need to put in a complaint. Get in touch with PALS and they should be able to help you do that. Good luck.

If I was you I would ring the surgeons secretary who did your lap, and email the conversation to her and surgeon and gp, and tell her unless you have a letter detailing your results from the lap, with in 5 working dats you will be putting in a detailed complaint, this is not good enough that you have had to wait this long, have you had nothing at all from surgeon? Was this all done by general gyne, or a bsge centre, if not bsge, I would go back to gp and demand a refferal to your nearest bsge specialist, look it up on line bsge list, take it with you to gp, now you have been diagnosed with endo you are entitled to be seen by bsge , I wish you luck and keep us posted

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