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Endometriosis UK
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Do I need the diagnosis?

Hi everyone,

after some research I realized that it is highly likely I have endometriosis. My symptoms include:

- Intolerable pains during my menstruation that last for more than 48 hours and it is becoming increasingly difficult to control them with painkillers

- Diarrhea and vomiting during those 48 hours

- Occasional mild pains throughout my cycle

- Occasional pains in the lower right part of my abdomen (just like appendicitis)

- I used to have irregular bleeding but after taking contraceptives for a month it disappeared

- Occasional pain during sex

I've been to numerous doctors for the above-mentioned symptoms and have done numerous tests. I get painkillers administered for the period pains. I've been to a gynecologist who "didn't find gynecological reasons" for the pains (after ultrasound and internal examination).

So now that I think I might have endometriosis, I wonder is it worth going to the doctor again and insisting on a proper examination, including MRI/laparascopy? I don't know if I'm infertile or not because I've never actively tried to get pregnant. I also know my body well and I know how long I will be aching and what soothes the pain and what makes it worse.

So do I really need an official diagnosis or should I continue my life, controlling the symptoms, until it becomes absolutely necessary to have an official diagnosis?

10 Replies
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Hey, only way to diagnose endo is through a laparoscopy. It does sound like endo but so many conditions can cause the pains.

You just have to keep pushing your doctors and gynae for answers. It took me a year to get a lap and had it done yesterday. Xx

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Thanks for your response! I'm just wondering do I need to push them or is it an unnecessary hassle? Basically, what will I gain from it? I just don't want to undergo an operation to hear that yes, I have endometriosis.

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I would definitely push them, that’s what I did but it depends if you want to have a diagnosis and treatment via surgery. It tends to be last resort after painkillers and hormone treatment hasn’t work.

You can only officially be diagnosed by a lap though as symptoms could be caused by anything xx

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Makes sense. Many of other causes have already been ruled out through other examinations (cervical cancer, cysts, STI, etc.). I guess endometriosis is one of the only few diagnoses remaining (one other possibility could be primary dismenorrhea, plus IBS).

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That’s what a lap would help diagnose. It’s not that bad of an operation and I have a fear of hospitals xx

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I've actually had one lap before for gallbladder removal. It wasn't as easy as the doctors assured it would be. So I'm kind of scared.

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It's a tough question. There's no cure for endo so treatment isn't a simple process of taking a certain medicine or just cutting it out through surgery. It's a condition of life long management- for some that's done through a pill or coil so it's barely even impacting their lives but for others it's surgery, chemical menopause and then some.

In some ways, earlier diagnosis can help if you have a particularity aggressive form so that you can try and prevent it causing damage to your organs (reproductive, bowel, blader etc) you would really not want to just leave this. But if you have milder endo, then I wouldn't think it's worthwhile going through surgery to be told what you already expect and to take the medication they'd already prescribe. Surgery comes with it's risks and each time they operate, they cause scaring inside, which can cause more issues with pain etc. The difficult thing is, the symptoms don't really match the severity of the endo...so really I think it's about weighing it up for you as an individual right now in your life.

Just to say- an MRI CAN diagnose endo- this is how I have been diagnosed. My endo is severe and everywhere so it's quite obvious on the MRI but more superficial forms of endo may not be spotted on an MRI. Specialist endo centres are using MRIs more and more now. I actually had a lap 2 years ago and it was clear but my endo does not appear to affect my reproductive organs, it seems to be more behind it and towards my bowel (lucky me!) so I think they missed it. It's a complicated illness and I'm afraid there's no black and white answers with it.

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Thanks for your response. Yeah, I basically have the same concerns about the surgery (scars, etc.). Actually my pains got worse after I had a completely unrelated surgery (gallbladder removal). Before that I was able to function with strong painkillers and I almost never had pains outside the cycle. So do I really want to take the risk of make it even worse than it actually is just to learn something I already knew?

Also, at the moment I don't want to undergo a hormone therapy anyways because I plan to get pregnant. So it's really complicated to make a decision. Perhaps I can just push for MRI for the beginning?

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that would be my advice- there's no risk and it's usually a much shorter wait time (it was 6 weeks for me and only a week for my second one as that was ordered by the specialist team). It won't rule out endo (although I would argue that a clear lap also don't rule out endo) but there's a chance it could tell you you do have it and where without surgery.

If you do want to get pregnant- that's what the drs will advise you do as it can help and the sooner the better as the longer you leave endo, the more chances of problems.

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Thanks a lot for being so helpful! I'll hurry with the pregnancy then. I'm already 32. No more time to lose :)

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