Thought there was hope!!

[amanda2kiddies]

Hi all I'll cut a long story short... I've suffered with pain and bad periods for seven years, started just during my monthly but then progressed over three years to be everyday! High in codeine and naproxen and tried zoladex, I had a lap two years ago no ending found, continued pain and gyny thought adneo, so last Nov I ha a hysterectomy, pure bliss one year of no pain, no exhaustion a normal life, then go to this Nov to now major pain during ovulation, back on the codeine it may be only two weeks every four I'm in pain but my god today I've felt like I've been in labour,

So I went back to my gp and they are saying they won't take my ovaries out as I'm too young (30) but she printed me a letter off the computer saying endo was present, no one told me this, so after my long winded rant is it possible to have the year break (don't know what to call it) but now back in pain, I don't know what to do, I can't cope emotionally it's draining it's putting a huge strain on my kids marriage and work, any advice?? X

[Starry]

Big hugs. So sorry the pain is back. You needed excision of the Endo alongside your hysterectomy. Can you get a referral back to gynae to discuss an excision surgery and find out where Endo was found?

If not already it may be worth getting yourself referred into a BSGE centre as a refractory case.

[amanda2kiddies in reply to Starry]

Hi starry, thank you for replying, I went back to the doctors when the pain was returning, they said the gyne wouldn't do anything more but maybe consider the fact I have ibs they said that I had this for 6 years before I saw a gyne and I argued the toss.

So I downloaded an app called flutter that is an endometriosis app where you can monitor your symptoms I've been doing this for three months so I can saw the docs when my pain starts, and funny enough it's every 27-28 days then it starts. I'm no expert but I'm sure ibs wouldn't just appear every 28 days unless it has something to do with my cycle..I feel like it's a constant battle. I'm waiting. For a referral to my gyne and hopefully he will help 😭😭 x

[Starry in reply to amanda2kiddies]

Good luck. Keep fighting, you can take the NICE guidelines with you too xx

[Loulou857]

Hi Amanda, I'm so sorry you are having an awful time. Although I may not have the answer, I hope I can shed a little light.

I've been living and dealing with Endo for nearly 20yrs, was finally diagnosed aged 30 so I've known for definite it was endo for 7yrs.

Anyway, I've tried everything to get rid of Endo, multiple laparoscopies, medication coming out of my ears. I was recently referred to an Endo specialist (hurray!), I planned on asking for a full hysterectomy - my dreams that this would solve all of my problems were shattered.

The consultant informed me that because I am under 45, I would require HRT, this would then trigger Endo again and I'd be right back at square one.

So in your case, I imagine what has happened is because you still have your ovaries then the hormone (oestrogen) that feeds Endo is still active and is triggering any remaining Endo.

After being given this piece of information, I initially was so distraught. But the consultant was so good, he basically said his plan for me was to help me manage my pain, perform excision surgery on the Endo that is on my bowel, and then from there it is a case of managing the symptoms until I naturally go through menopause.

It was then the penny finally dropped for me. Endo is never going to go away. What can happen however is that I can find a way to manage the symptoms through surgery and pain management and anything else that's available.

So my advice to you is to keep going back to your GP and demand a referral to gynae, to get the Endo excised - this will hopefully reduce your pain. But it will come back unfortunately, you will always experience some form of pain but it can be managed! (Demand a referral to a pain clinic, that's what I'm going to do when the Endo specialist inevitably discharges me). That's the key! We don't have to suffer in silence.

Xx