Help me get a diagnosis please!

[LetTheBattleBegin]

Suspected endometriosis. Original nurse was excellent, took me seriously and referred for blood tests and scan. She told me unlikely anything abnormal would show but needed to rule out other things. Tests and scan came back normal and apparently the hospital let my doctor know.

Phoned doctors today to ask what I do now. They said all normal so they won't be doing anything else. I said "I know it's normal but the problem still remains". Was told to make GP appointment.

So when I finally make my appointment, what do I say? I'm gearing up for battle. I'm well aware of the years women suffer for. I did all that when battling infertility and it's not happening again.

I don't want to be put on the pill (literally sends me crazy and I haven't been on it for 10years). I want a diagnosis.

Just strung out and flat and have only just seen my husband through a year of hell trying to get a diagnosis (that ended up in a week in hospital because nobody would listen. He now has a proper diagnosis).

Any advice is more than welcome on how to approach this, especially if GP doesn't take it seriously. Thank you

What exactly are your symptoms?
Have them written on a list to bring with you to the doctor.

Extreme (and I mean extreme agonising) pain when I begin my period. Sickness/feeling faint. Period has become heavier. Deep pain when going for a poop, even when not constipated etc. Started suddenly, 7months ago and it was affecting my life. I've got strong painkillers now to ease the pain. History of infertility but back then I had no pain so just had blood tests and all came back normal. We adopted so did not pursue it anymore.

Everything looks completely normal on the results.

Smears are all up to date because I have a history of issues (had a procedure where they take some cells away from the cervix) so I have always been very good with keeping those appointments.

Oh and the last year I bleed a little after sex too. Examination etc showed nothing wrong there either.

I have endometriosis. I was diagnosed 7 years ago and back then the only way to find out if you had it or not was by having a laparoscopy. I had to go private as the waiting list was ridiculous and I could cope any longer.

I'm not sure if that's the only way to diagnose still as things may have changed.

After having all the tissue removed I was told to go on the pill (or the coil but that was a hell no!!) to stop symptoms coming back as quickly.

You should push for a referral to a specialist and under the revised NICE guidelines on endometriosis, your GP must consider this seriously and not fob you off. Excerpt and link below:

1.5 Diagnosing endometriosis
1.5.1Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation.

www.nice.org.uk/guidance/ng73/chapter/Recommendations#endometriosis-symptoms-and-signs

Thank you, I need to find the energy to battle on. I was also told the pill is good for stopping it coming back but honestly I don't know what's worse. I was literally angry and upset 25days out of 30 on it and I tried several types. Unless the pill has improved over the years...

Echoing MellowYellow - you need a referral to one of the specialist centres that is BSGE-accredited, or failing that, one that's on the 'provisional' list. Find both lists here: www.bsge.org.uk/centre/

Ultrasound is pretty crap as a method of diagnosis unless it's in ultra-experienced hands, and for that you need a radiologist who's really specialist, not a sonographer which is probably what you got. It should never be used as a means of excluding endometriosis and you shouldn't be being told that as the problems inherent in using ultrasound this way have been known for a couple of decades now.

The deep bowel pain is concerning and you should push to see a specialist and exercise your right to choice as to who that is - do pick one of the centres on the list because it increases your chances of ending up with a diagnosis.

The pill is a first-line treatment that slows it somewhat, but nothing more. The gold-standard is currently excision (laser ablation) - this gives the best results. It's true they may be keen for you to go on the pill or the mirena coil after excision but it's not a sure-fire guarantee of keeping disease-free unfortunately.

Good luck.

Agree with everything @MissElizabethLinley says above.

Also lots of sympathy for the pain and difficulties you are having. I had the same experience as you on the pill and took myself off it after deciding that nothing was worse than feeling like the pill made me.

What the other respondents have written.

I must say I did think of endometriosis too when I read about your symptoms. It certainly cannot be ruled out and its often not detected through either blood tests or internal ultrasound scans (had more of these than I care to mention and none of these detected the endometriosis in my uterine cavity).

I would keep a daily pain and symptom diary if you do not already do so to show the gynae. Would certainly try and get into a BSGE accredited centre.

I would be asking them for a referral to a gynae and do not take no for an answer. As far as I am aware, the mirena coil is still not a licenced treatment for endometriosis (and I have refused this for that reason). You will certainly need to be persistent in order to get answers.

Thanks all, I'm writing down all suggestions and will try to fight my corner with the doctor. Can I ask why the bowel pain is concerning? Thank you

Sorry, OP, I shouldn't have just flung that in there. I was writing quickly.

The bowel pain might indicate deep infiltrating bowel disease that needs to be dealt with. Then again, it might not.
It might indicate scar tissue that has fused the bowel to your uterus or ovaries - that can be pretty painful too. Or something else entirely. But it should be investigated and not dismissed.

Thread hijack alert: @AttilaTheMeerkat, hope you're well. We 'knew' each other a long time ago on here, when I used to be called something else.