Is my pain from endometriosis?: Hi everyone... - Endometriosis UK

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Is my pain from endometriosis?

Steph222 profile image
8 Replies

Hi everyone, I'm new and have recently been diagnosed with endometriosis. I'm 22 and have always had painful periods but this strange kind of pain began very suddenly for me in September 2014. The pain is a constant vaginal ache/sometimes burning sensation; my GP treated me several times for BV/thrush but nothing made the pain go away. After finally being referred to a gynecologist (who at first also gave me BV treatment but that resolved nothing), a laparoscopy spotted a small case of endometriosis behind my womb and my gynecologist says this is definitely the cause of my problems.

I was a bit concerned as I have no pelvic pain, or any pain whatsoever other than the very lower area, and it's dependant on the position I'm in (for example, when I'm sitting upright the pain is more discomforting, but when I stand or walk around I rarely notice it at all). Although most of the time the pain is only mild, it always worsens during/after sex, and sometimes this causes deep muscular pain around the area also. My menstrual cycle does not affect the pain, it's just consistently on/off, sometimes mild, sometimes sharper.

My sister also used to suffer from endometriosis, but her symptoms were much more painful and followed the more 'typical' pattern of endo pain I have read up on. She also tried a variety of treatments (combo pill, mini pill, coil) but the only thing that worked for her was the Depo injection. I'm currently taking Provera tablets 3x a day for 90 days (I've only been on them for half a week so I haven't noticed a change as of yet).

I wanted to ask has anyone else experienced solely localised symptoms such as this from their endometriosis, and if so have you found any particular treatment helps with your pain? I'm not sure how long the Provera pills take to kick in but I'm hoping to see some change at last soon.

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Tboag profile image
Tboag

Hello, sorry your suffering, did your surgeon remove any ENdo whilst doing your exploratory lap, and where did she say it was?

Xxx

Steph222 profile image
Steph222 in reply to Tboag

No none was removed, it's just a small amount behind my womb, not near my ovaries so my doctor seemed quite pleased about that.

Tboag profile image
Tboag in reply to Steph222

Hi it's very possible that's what's causing your pain why did he chose to leave it there, I would get a referral to another gyne doc, ive just been diagnosed with endo and he excised it from behind my uterus and ligament, unfortunately I havnt seen much improvement but I also have adenomyosis so that's what my surgeon thinks is causing my pain,

Xxx

Steph222 profile image
Steph222 in reply to Tboag

I'm not sure why it wasn't removed, I've been asking my sister if hers was ever operated on and she says thats only done if the condition is quite severe?

Also could I ask do they diagnose adenomyosis through the laparoscopy procedure too? I've just been looking into the symptoms and some of the pain ones seem to relate to mine as well, though that could just be coincidence.

Tboag profile image
Tboag in reply to Steph222

Hi, it's usually dealt with while in there doing a lap, mine wasn't exstensive or servers but with endo the amount you have dosnt mean the exstent of pain, ie a little found a lot pain, or a lot fount and little pain, who did your lap,

And ADENOMYOSIS is hard to diagnose, but mine is servers snd he said he could see it clearly, can change the appearance of womb but sometimes it's quite small in the wall and can't be seen, he also thought it straigh away after doing a internal, not sure why but I think it was enlarged and felt lumpy, what symtoms do you have that might relate,

Defo go get a refferal to a endo specialist, or at least a good gyne doctor,

Feel free to message me anytime good luck darling xx

Steph222 profile image
Steph222 in reply to Tboag

Ah I see, I'm not sure why mine wasn't operated on then, only diagnosed. My gynecologist performed the lap though so I'll ask him why none was removed next time.

The adenomyosis symptoms that are similar to mine were blood clots, pain upon sitting and pain during intercourse, however pain for me is always lower down than my uterus which is why I'm unsure what's actually causing that (maybe it's a different condition as suggested by Amythest below).

Thank you very much for your advice!

I have this too for many years. I am 56. My endometriosis (like yours not very extensive) is not considered active now due to my menopausal status. My gynae referred me to a pelvic physio (appt on 17th April) probably vulvodynia he said (classed as chronic pain) and I need to have other nerves ruled out of the picture - like cluneal nerve or femoro genital nerve. All Common to women with endomentriosis. These conditions require specific treatment.

Steph222 profile image
Steph222 in reply to

Ah thank you very much, I'll definitely be passing this information onto my gynecologist too, I did think something else might be the culprit since my pain isn't at all linked to my periods and it's a muscular ache rather than sharp/cramping pain.

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