what if its not endo?: My specialist saw me... - Endometriosis UK

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what if its not endo?

samanthac profile image
5 Replies

My specialist saw me recently and expressed a reluctance to do the laproscotomy i got the impression she didnt think it was worth it, but then out me on prostap injections until i see her next to discuss it, i have been so sure for so long that this is what must be wrong with me i didnt think about alternatives, so my question is does anyone know what else it might be?

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samanthac profile image
samanthac
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jojo777 profile image
jojo777

Only through laparoscopy is possible to see if there is endo or something else. Scans and other tests cant usually show endo. Your doctor had to give you the option of laparoscopy before she put you through temporary menopause with these injections.

Its up to you if you want to go through hormonal treatment before knowing what is exactly the problem. personally I would do the lap first so I know what i have to deal with.

If you think that your doctor is very reluctant for a lap, find another endo gynae in your area not only for the lap but to get a 2nd opinion too x

samanthac profile image
samanthac

thanks, the conversation we had about the injection was short! i was sent into the hopsital by my gp as i was in so much pain and my specialist was there that day she said, i'm reluctant to do the laproscopy i dont think it will help but there is an injection, do you want kids,i said no she wrote a prescription, said i also need hrt and left. it was only because the nurse who did it explained the whole thing about it to me i knew what it was really for! she did the injection and told me i'd have another on the 18th, after finding out what the injections for i cant see why she seemed reluctant to do it as the injections to treat people with endo pain. i'm going to take someone with me from ow on i get flustered and just agree cause i dont want to be an awkward patient.

cupcakegirl profile image
cupcakegirl in reply tosamanthac

This seems to be common amongst some gynaes and personally I think it's a money and waiting list saving measure - its cheaper to put you on a six month course of prostrap or similar than to do a lap, unfortunately, and it also means less people on the waiting list.

If it is endo, the prostrap should help you, although not everyone gets relief from it so it won't be a definitive diagnosis. I don't know how much you know but the drug tells your brain to shut your ovaries down completely - this means you will go into a temporary menopause, and will get the side effects of menopause, like hot flushes and so on. If you're really struggling with the side effects you can take HRT but you may not need to. As the endo is starved of oestrogen it shrinks, and as you're not having periods the endo doesn't bleed and spread. That's a very basic explanation of how it works, of course, but should give you an idea. I think it's disgusting that so many docs give these drugs without fully explaining them as they are very strong and you should be fully informed of what you're agreeing to.

If the drugs help, it is probably endo. If they don't, that doesn't mean it's not endo. If they help and the gynae says this means you're diagnosed with endo, challenge them on this as endo cannot be diagnosed without a laparoscopy. If you have endo symptoms, they can't say for sure that a lap wont help so she was talking nonsense in my opinion.

Once the treatment has finished, make sure you have a follow up appointment with the gynae. Post here about what happened with the treatment and we'll help you with what to say to them. Surgery should be avoided where possible, but they need to either diagnose endo or rule it out and this treatment can't do that for sure.

I'm not sure what your symptoms are, but other potential illnesses could be PCOS, fibroids, or adenomyosis. Have they done an ultrasound? That would rule out PCOS and fibroids. Adenomyosis is very hard to diagnose or treat - I suggest you google it and find out more.

Good luck with the treatment

x

samanthac profile image
samanthac

thaks guys i get severe pain in my pelvic area, not always cyclical, i get periods that last for 30 days and are so painful i cant walk, sometime when i stretch i feel like my uterus is pulling apart and i have pains in my bowels but a sigmoidoscopy found nothing inside. i am also tired all the time and i had to be put on cerizette so that i didnt need to take a pill break. i am not seeing any effects of the injection either pain relief or flushs, just a bit emotional at times!!

Mog29 profile image
Mog29

I don't know what else it could be but when I saw my gynae this week and told him ALL of my symptoms, the constant pain, heavy periods etc etc etc, he said that my prolapse and my PCOS would deffinatley not cause pain like I described and said I had classic endo symptoms!! It's probably best to get lap done first. I am waiting to find out what the next step is now too....

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