Endometriosis UK
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Suspected Endomitriosis

Hi Everyone, After some advice so here goes :)

I have been suffering with really bad periods since coming off the combined pill 4 years ago, I have had loads of tests and in 2015 I was diagnosed with PCOS, I was booked in for a laparoscopy and hysteroscopy to check for endo however found out the week before I was pregnant, fast forward a while, I had LB in june 2016 and then had the Mirena coil fitted in July 16 thats when all the problems started :( I was suffering with constant bleeding and also a lot of pain in my left side, after visits to GP and Gyne they told me the coil was ok then I went to a family planning clinic who removed it and said it had been lodged in my cervical canal :( since then my periods are awful, I have had cervical and endo biopsies all clear, I am currently waiting on a refferal to a different hospital who hopefully will deal with it better but after some advice, here are my current symptoms:

Heavy bleeding, periods lasting 2-3 weeks out of the month, severe bloating at random times of the month, Left sided (possibly ovary) pain, Rectal bleeding (worse when on period) Severe lower back ache, pain during and after sex, Bleeding after sex.

I feel like I am getting no where with doctors as they don't even know if it is endo yet but this is what they expect?

Any advice would be much appreciated xx

2 Replies

Hi, I've been told by my doctor that he suspects endo and im currently going down the diagnoses path. I may not be much help as I'm currently at a similar stage as you but just wanted to say my symptoms are very similar to you.

When I had the mirena fitted after having my son I developed a left sided pain, it was awful, some days I couldn't stand up straight as it felt like there was a pulling deep inside, I had the coil checked multiple times by internals as well as ultrasounds but it was always showing as in the correct place. My mirena eventually fell out when I had a particularly heavy period. The left sided pain eased off for a bit but has recently come back, this is what sent me back to my gp who the suggested it could be endometriosis. My ultrasounds show that my left ovary is abnormally high and partially hidden, I suspect this could be endo pushing it up and back but can't be sure until they do a lap.

Endo can only be confirmed with a lap, you say you've had endo biopsies clear, were these swabs or from a lap?

Only advice I can offer is to ask for a referral to a gynaecologist, say you think it may be endometriosis, stress the fact you're getting pain and bleeding after sex as these are symptoms that should definitely not be ignored.

Best of luck x

1 like

Hi, sorry to hear about your symptoms.

They did a hysteroscopy on me to get endometrial biopsy because they suspected cervical or endometrial cancer, they all came back clear, there were some abnormal changes on cervix but nothing to worry about.

I have been under gynecologist at 1 hospital but they suspect endometriosis and think it could be on my bowel but as they can't deal with it on bowel there they have referred me to a different hospital gynecologist that specialize in endo and bowel so just waiting for that to come through x

Your left side pain sounds exactly like mine, the best way for me to describe it is it feels like my insides are stuck together and when I try and move it feels like something has ripped its awful! X

Gynecologist I was under suggested that once they have sorted endo problems (if it is that) then they can do ablation of the womb but heard some horror stories so not sure as I'm only 34 x


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