Confused and scared to talk to doctor - Endometriosis UK

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Confused and scared to talk to doctor

lausa profile image
6 Replies

Okay, so my story started in July when I woke up one morning and was suddenly hit with severe pain in my lower abdomen. If I was pregnant , I would've thought I was in labour! I was fitted with the mirena coil in February so I was convinced it was coming out. I was rushed to hospital, and all my tests for pregnancy came back negative and the IUS was perfectly in place. Cut to a few days later and I was still in severe pain so I was rushed back in. I had an ultrasound which they said I had a small cyst that had bled. The doctor wasnt convinced this caused my pain, but I was discharged anyway.

Since then ive had the reoccurring pain, luckily not as severe and it doesnt last as long. My last ultrasound was a month ago and it came back no cysts? But im still getting pain.

My friend suggested endometriosis, which seems to fit apart from one thing. I haven't had periods in 5 years because I was on back to back pills and then straight to the IUS. I read it's pretty hard to develop endo whilst on contraception.

Im having another ultrasound soon but im pretty sure its endo. I just dont want to go through surgery and in the end its not :(

is it true endometriosis doesnt show up on ultrasound?

The pains feel like a severe cramp and sometimes stabbing pain. They've been an almost daily occurrence since Sept, varying degrees of pain.I sometimes get nausea from it, stress can trigger the painI've had a little bit of bleeding too. It can also be positional, for example if I lie on my stomach or slouch a certain way.

does this relate to anyone? Im only 21 and im scared to ask my doctor about endo in case I get shaken off because I have an IUS.

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lausa
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6 Replies
picklestar profile image
picklestar

hi I had the same symptoms it was about a month after I was holiday . rushed to hospital they did all test scans extra and had a cyst on ,y left ovary they said it was common to get with the coil . o was treated with 2 lots of antibiotics and pain killers and because I was still bleeding tablete to stop that to . had so much trouble with the coil I was in pain every day bleeding every day . went back to hospital and I have now had it removed. I fell so much better nut I am booked for hysterectomy in 4 weeks my choice .

no you cant see endo with ultra sound .

I would go back and get it looked at . have you got a woman doctor or is their one at clinic we have two when my doc would not listen to me I asked to see a woman doctor that's when mine all got sorted out . the other one is new and she deals with gynae problems and is great I try and see her now :)

I hope that is of some help x

Starstellar7 profile image
Starstellar7

It does sound like endo to me, similar pains to what I get sometimes.

Any pulling pain when you roll over?

Have you ever had abdominal surgery for anything eg appendix. Adhesions can get everything tangled up which makes for some weird and wonderful pain.

I was doing tricycling over nearly three years and mine came back. I don't think there are any rules as each case is different.

Can it checked out with laparoscopic surgery if necessary and don't let them just have a look, if its there they should remove it all at the same time. More surgeries lead to other issues such as adhesions. Implants and tiny spots of endo can't be seen by ultrasound.

Good luck with it! X

bexed profile image
bexed

You poor thing, it does sound like it could be endo and you're right it doesn't always show on an ultra sound. You should talk to your doc, they might recommend key hole surgery (Laparoscopy) to see if there is any endo and how they can treat it. This might help your pain and is a very quick procedure that doesn't take long to recover from and leaves very little scaring. Good luck xx

Amelia_M profile image
Amelia_M

The culprit is your Mirena. I had the same stabbing pains, also felt like labour pains. After 5 months I finally had the Mirena removed and never had the same type of pain again. My advice would be to get it out as quickly as possible.

Karii-Ann profile image
Karii-Ann

Hey Lausa.

I'm 23 and similar to yourself. I am not on any contraceptive so I cant help in that way, but my GP sent me for 3 ultrasounds over the last 2 years, all of which came back clear.

In April this year the abdo pain became more regular (along with other symptoms) and I finally got referred to a gyne. After the examinations she said that it is Endo on the cervix and could possibly be wider spread and suggested I have a laparoscopy.

I think it could benefit to ask your GP about Endo. It could get the ball rolling in the right direction?

Good Luck.

K x

lausa profile image
lausa

Thanks to everyone for replying! I appreiciate all the advice and support.

Starstella7, I can get pain from twisting certain ways, like if I lean over or turn in bed. I've never had any surgery because I've always been healthy! The pain I had in July was the first time I was ever hospitalised :(

The cyst was very small (as the doctor and sonographer said) so I didn't need any anti-biotics or anything further other than a follow up scan 6 weeks later. There were no cysts on that scan and I thought I was crazy because a few days before I was in agony!

My GP is actually a gynae too! She's lovely and will listen to any of my concerns. She was surprised that I was discharged without a Consultant Gynae because I left the hospital with pain.

I was worried it was my Mirena coil, I've had it checked every month, my GP says it's in place and an ultrasound confirmed it hadn't perforated anywhere. Could the hormones be causing me pain or just because it's there? My GP told me that any problems would've occured within the first 3 months, and I had it put in in February, but I suppose it can always cause problems :(

I'll go back to my GP and ask about Endo and also if the culprit is the Mirena, she's really caring so I know she will listen.

I'm just worried that because I don't have periods (and haven't in 5 years) and I heard it is really hard to develop Endo whilst on contraception. I've only ever had Progesterone based contraception too, never Oestrogen!

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