What to expect?

Hi all, What can I expect from my first endometriosis appointment?

In addition, what steps following that can I expect? e.g. appointments and tests... what is the standard process?

I have my first endo/gyno appointment in six weeks time after spending 5 years going backwards and forwards with various GPs over my symptoms.

Experiencing a lot of pain and symptoms, both physical and mental at this stage. Neither helped by trawling through the NHS page for endo treatments!

What is the kind of thing I should expect from the various tests? Realistically, how has the diagnosis and the following steps impacted your life? I am 22 and am starting to get quite scared!

Any help and insight you can give me would be hugely appreciated!

[Abi_97]

I'm only 20 so I dont know much but yesterday was my second gyno appointment. On my first appointment they asked about my symptoms then they gave me a pelvic examination from they symptoms they suspected I have endo but the first doctor I had thought I was too young for an op so he put me on a trail period of taking the pill constantly for three months. This second time I've been they have decided to send me for the laparoscopy and the doctor suggested I get the mirena coil fitted while I'm under. I'm a tad nervous about the coil tho. Hopefully you will get a doctor that will send you straight for an op to find out whats wrong.

[Hidden in reply to Abi_97]

Ahh okay, I was on the pill from ages 16-22 have have been on the coil from the beginning of the year. I'll be honest with you, the coil was agony going in. I fainted and had to be revived with a kitkat. But, take plenty of pain killers before (I didn't which they told me was a mistake) and perhaps have a hot water bottle to relax yourself. But if they're going to put you under you'll be fine! I hope so too, I'm just really worried about the op...

[Abi_97 in reply to Hidden]

Thank you they are going to put it in while I'm under but I'm still worried that it will cause me pain after but all I can do is try it. I'm worried too about the op but not actually about the process about what happens after doesnt help that my mum recently had her gall stones out and had a bad reaction after haha I keep tell myself I'll be fine we will both be fine!

[Hidden in reply to Abi_97]

Honestly the going in part was the painful part. Afterwards Its just like having a bad period. I struggled having sex for a while after as I was a bit tender. oh no! You'll both be fine, take care of each other and have a stash of hot water bottles and pudding on stand by.

[Abi_97 in reply to Hidden]

I actually struggle to have sex anyway and of course I'm used to painful periods. Thank you thats makes me feel a bit better. Oh yes dont forget a film marathon on hand 😉

[Hidden]

It really depends on the gynae - in my first appointment, he asked me a few basic questions - what were my periods like, did I have pain during sex, and then said he was sure it was endo and booked me in for surgery. He said at that point he would put in a mirena (this seems pretty much standard) and that was it. No scan, no examination. At that point I'd had what was deemed to be a normal ultrasound at my local hospital, and I had raised CA125 (the ovarian cancer blood test).

I am much older than you (I just turned 40) so you are unlikely to find yourself having to make the same choices I did, but it was found that my endo was very severe and I had bladder and bowel involvement as well as adenomyosis, so I was referred on to an endo specialist at a bsge centre where I had 2 further surgeries including a hysterectomy earlier this year. I know it is difficult, but try not to get too stressed, keep away from Dr google, and try to keep an open mind when it comes to treatments - don't rule anything out until you've tried it.

[Hidden in reply to Hidden]

Ahh Okay. I've started to keep an "endo diary" so they can see what my symptoms have been and for how long. I have the coil at present and have done for a good 10 months now. Prior to this I was on the bill for roughly 6 years. Prior to a hysterectomy, what surgeries did you have? I'm in the same boat with my bowels being the part of me that is affected the most from this.

[Duracell8D in reply to Hidden]

Hey GingerRose_18 I found an Endo diary really helpful. It allowed me to see a pattern of 14 days bleed on and 14 days no bleed. I am waiting for my diagnosis but it was useful for the doctor’s appointment x

[Hidden in reply to Hidden]

I was diagnosed quite late (at 38) after having symptoms from the age of 13, so had 3 surgeries very close together - the first lap ended up being diagnostic only (so the gynae put in the camera, saw the extent of the endo, and ended the surgery there). That was in January 16. I then had a second surgery in November 16 at the bsge centre, where they drained the cysts on my ovaries, excised some endo from my bladder and fully mapped out the disease in preparation for the hysterectomy and excision which I had in March this year. In between I had pretty much every drug treatment going - mirena, decapeptyl, norethisterone, cerazette and prostap - to try and stop my bleeding, but none of them worked.