Suspected endometriosis and multiple cyst... - Endometriosis UK

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Suspected endometriosis and multiple cysts.. I can feel a lump (really long 1st post)

vmagpie
vmagpie

Hello!

Straight to it.

I think I must be able to feel, externally, either the multiple cysts (seen during ultrasound scan) or part of the suspected endometriosis on the outside of my body.

Two years ago, not long after having an emergency CSection, I noticed a lump, on the left about an inch below my scar that I thought could be from an internal stitch or something. Got it checked, got dismissed. It grew over a few months to the size of a pea, couldn’t see it from the outside but could feel it if I felt for it. Got it checked, got dismissed. It started to hurt leading up to my period, a visible pouch seemed to be forming around it which was bigger leading up to my period. Got it checked... wait... got dismissed, kind of. But got the Mirena coil fitted. Lump remained. Pain ok for about six months. But started getting lower back and left hip pain.

Recently (in the last 3 months) Pain increased, worse leading up to my period (but I don’t bleed), lump hurts, constant hip, back, pelvic, leg pain all on the left side, regular bloating, exhaustion and the lump and the pouch around it are bigger and I can feel the lump is attached deeper in and further down my pelvis. I get pain with a full bladder, or if I need to pass stool.. it’s not cool!

I ended up in a&e about 5 weeks ago. I had bloods taken, external and internal ultrasounds done, was seen by a junior dr on the gynaecology day ward, was told I have multiple cysts on my left ovary (no size mentioned) and told he suspects with my menstrual symptoms and history I described to him, that I have endometriosis. I haven’t worked for 6 weeks. I’m so tired and fed up of feeling ill and being in pain...

I’m seeing a gynaecologist this Wednesday for the first time.

I have experienced years of pain and emotional symptoms throughout my entire menstrual history except during 3 pregnancies, I’ve tried numerous contraceptive methods, pain relief, antidepressants, even mental health services when the drs kept telling me nothing was wrong, I had bad periods.

I’ve struggled with this growing lump in my pelvis and the symptoms and pain that go with it for just over two years..

And this Wednesday I’m seeing a gynaecologist for the first time.

I’m choked and I don’t know which tears to cry first.

5 Replies
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Hi you need to ask your gynaecologist could it be endometriosis in your c section scar as that’s what it sounds like. They thought I had that but not sure it was now until I see the consultant in couple of weeks.

I had an mri and an biopsy of the mass they found an showed endometriosis. I was told they would need to reopen my c section scar but he did everything keyhole. If it is in your scar it is very rare an likely they won’t have seen it before so please ask.

Hope you get sorted xx

vmagpie
vmagpie
in reply to Melandava

Thank you, yes I will be asking that as the lump started from there.

I wrote the lump was below my scar but meant above it.

My whole menstrual history suggests Endo and the junior dr I saw when I went to hospital in pain and a locum GP thinks so too. I’m not sure if the csection triggered it again or if that’s even possible.

I know they say that severity of symptoms doesn’t always suggest severity of the disease but I can’t help thinking it’s bad when it’s causing problems with my bowel, hip, leg, lower back, pelvis and sciatic area.. and now it’s constant.

I’ll post an update after my appointment later today.

Thanks for your reply. Hope you are well.

Melandava
Melandava
in reply to vmagpie

Please let me know how you get on. It’s ll very scary and I know how awful the pain is. The only way they can really tell what’s going on inside is by a laparoscopy although it may help for them to do an mri first. I’m 4 weeks on from my laparoscopy and the pain and tugging feeling in my pelvis has gone. Take care xxx

vmagpie
vmagpie
in reply to Melandava

Hi,

You mentioned that they thought you had Endo in your scar but it wasn’t? Did they give you any indication as to what it could be? I’m glad you feel better after your Laparoscopy :)

So my appointment went pretty well I think. The dr was really nice, she went to her senior and got the request signed for doing an MRI and said I will have a laparoscopy after the results. She explained that the mri was so they have an idea of where they’re focusing the explorative lap and that they’d remove what they could of what they can see.

She thinks I also have sciatica and will write to my GP to further investigate. But that the mri could pick that up anyway.

I took a close friend, only cried a bit, the dr was sympathetic. I forgot to ask what I do about the pain in the mean time which was stupid and she couldn’t give me any time frame on the wait for the MRI.

I should feel happy or relief or something, I didn’t have to fight my corner in the slightest, I didn’t have to ask for the procedures.

I’m sure I’ll be happy when the appointment letters come through..

But for now I’m sitting a different waiting game with the same discomfort and pain.

What would be your advice on preparing for the laparoscopy?

xx

Melandava
Melandava
in reply to vmagpie

Hi ah I’m so glad that they are looking into it all thoroughly for you. Mri is what initially confirmed my mass as endometriosis.

Pain relief wise I can’t take ibuprofen so I took co codamol or paracetamol depending on how bad the pain was. To be honest the only thing that eased my pain was a really hot hot water bottle.

When I seen the dr before I was discharged he told me in great depth what they had done but I’ll be honest I was still quite out of it so I will ask my consultant on 1st August whether it was in my scar or not.

What I remember him saying was that I had 2 cysts which were removed. 1 was stuck to my Fallopian tube so that was removed aswell. He said I had lots of adhesions, my previous appendix scar wa affected and my uterus was stuck to my abdominal wall and that was the lump I could feel in my pelvis. He said I had endometriosis nodules in my abdominal wall. He said it was very extensive but that I should be sorted now? Not sure what happens next but I’ll ask when I see my consultant.

For the lap I’ll be honest the most pain I found was the trapped wind afterwards. That was agony 😢

Take some windease or wind settlers into hospital with you and as soon as your allowed start taking them. I had my hot water bottle when I came home and heat patches for the pain in my shoulders. The pain of the lap I didn’t find too bad. I just stuck with my own over the counter co codamol and paracetamol when it eased. I felt really sick after the anesthetic and that took a few days to get out of my system. You’ll need lots of help at home as your not allowed to lift etc. I was told 6 wks until I can lift and drive.

You will feel so much better once your appointments come through because your finally going to get sorted. Keep me updated and I’ll let you know when I’ve seen my consultant xx

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