Need some reassurance : Hi, this is the... - Endometriosis UK

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Need some reassurance

Kmp56 profile image
5 Replies

Hi, this is the first time I've ever posted in something like this so apologies for waffling.

A tiny bit of back story, a few years ago I was taken into hospital with what they thought at the time was kidney stones. It turned out to be a 15cm cyst on my left ovary and ovarian torsion. Within a day I had it removed as well as the ovary and tubes.

A year later I got increasing pain again. I'd always had intensely painful periods so I thought that was normal but this was a bit different. After a laparoscopy it turns out my bowel and bladder are attached from old scar tissue from the previous operation and I had endometriosis. My gynae was amazing and since then I have used the pill and diet to control the pain.

For the the past year, it's been much better, the old shoot of pain and a dull ache here and there but nothing to set alarm bells ringing. However in the past month the pain has been returning with increasing intensity. I saw my doctor a few weeks ago and explained my concerns (I have the same lower back pain as I did when I had the cyst) anyway I didn't feel like she wasnt particularly helpful but has put me on waiting list for a scan.

The pain is now getting worst I'd say 6/7 out of 10 but I've experienced 10/10 and I never want to get there again.

I guess I'm wondering people's opinions on if I should wait for the scan or just drop in to a&e (I feel like a fraud because I've been in worse pain than this many times before) but the stress of not knowing and being in pain lol day every day is getting a bit much

I'm reaching a point where I want children and don't want to lose that opportunity. But I'm worried that this is making me a bit irrational.

All suggestions welcome

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Kmp56
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5 Replies
Jdgirl030 profile image
Jdgirl030

Please don't label yourself as irrational. Your health is the most important thing, of course you are right to be feeling concerned and wanting to be well as soon as possible. I do fear taking yourself into a&e may be a negative experience as like you say, you are not in pain at the moment to the degree where you feel you need to go. If you needed emergency services I guess it wouldn't require this level of thought. I would maybe speak to your doctor about if there is any way to speed up your referral. Maybe tell her that your pains are getting really intense and that you nearly are taking yourself into a&e.

Kmp56 profile image
Kmp56 in reply to Jdgirl030

Thank you so much for your reply. Its nice to talk to other people that understand the situation. I feel like I've been panicking a little bit because it's been so long since it has affected my daily life in such a way... but I guess I'm probably much luckier than others with the same condition. I will go back to the doctors and explain again.

littlebrownbird profile image
littlebrownbird

You may be able to find the telephone details of the consultant's secretary online. If you give her or him a ring, they will be able to give you an indication of how long the waiting list. Refrain from going to A and E as they (quite rightly) will refer you back to your gp, as they are not specialists in your condition.

I'd suggest asking your go for an urgent referral.

Good luck 😊

Angela4141 profile image
Angela4141

Hello im Angela im frim usa Texas Ive been suffering from endometriosis for more then 10 years 7 surgrey for scare tissue removel anthe last they see it on my bladder I asked them to go ahead do a hysterectomy since the last surgrey in 2009 I never got my period back so minus well my new obgyn said if she did that I could come iut with poop bag and or pee bag so I tell her what to do with the pain she tryed give me stuff start my period no but hell no im not going back tru that nor the hot flashes I tild her I needed somthing for pain an she to me take advil haha I laughed at her I soon will be seeing another doc with anither opion.

GrittyReads profile image
GrittyReads

A scan (trans-vaginal) can see some endo tissue, but not necessarily all. The main diagnostic procedure for endo is a laparoscopy, so I'm not sure why she has not ordered one of those. Might be worth asking.

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