Endometriosis

[twinkleto]

Hello ladies.

I'm looking for some experiences with endometriosis eg if you have the disease what symptoms do you get?

More specifically:

Are they related to and limited to around the time of your period?

Have you ever been hospitalised for the symptoms?

What age were you when diagnosed?

How were you diagnosed?

Thank-you!

Are you suffering with the condition or undertaking research? If the latter, can you give details - academic, journalism, SM …?

Hi. Made this account to reply to you.
Stage 2 endo here.
My symptoms where all the time but worse on my period. It was different symptoms for on/ off period.

It took me 11 years and countless doctors and tests to get diagnosed.

My symptoms included.

• Painful periods ( i would throw up, pain killers wouldn't touch it and my mum had morphine after an operation and even that didnt touch the pain)
• Painful sex
• Back and leg pain.
• Mind fog.
• 4 miscarriages (infertility)
• i had random days where i was in so much discomfort and pain that i couldnt move.

Had my op to diagnose just over 2 years ago. Found out my right overy was stuck to my skin wall with the endo. I had two cysts and stage 2.

I was lucky enough to fall and stay pregnant with my son a few months after i had my operation.

If your going in for the operation then few tips.

• Get milk of magnesium ( for shoulder pain you experience after)
• stock up on gauze pads.
• for about a week you will be walking in an L shape.
• rest
• when you feel able and ready, try walking a short distance then increase slowly.

Hope all this helps and its not just me rambling on.

Oh erm just asking for my own purposes! Currently under investigations and had never ever considered endo before, can't quite get my head around it.

Thank-you, that's really helpful. I will be having some investigations soon. I had never considered endo and now that it's been suggested my mind is whirring. I hope you are ok x

More specifically:
Are they related to and limited to around the time of your period?
It was mainly cyclical in nature.

Have you ever been hospitalised for the symptoms?
Not prior to diagnosis

What age were you when diagnosed?
Early 30s

How were you diagnosed?
Via a laparoscopic type op called ovarian diathermy for subfertility issues.

My main symptoms were very painful periods, rectal pain, pain down front of legs (due to the sciatic nerve being inflammed), back pain and pelvic pain. It took me 17 years to get diagnosed.

Endometriosis UK is a good website to look at.

A standard internal ultrasound scan may not pick up endometriosis if it is present (it certainly did not detect endometriosis in my case although my uterine cavity had endometriosis all over it).

You need a laparoscopy; that is the usual way it is diagnosed. Do not be fobbed off, you will really need to be persistent in order to get answers.

Thank-you. So helpful. X

Thank-you. I've had several abdominal MRIs but no laparoscopy. X

You need a lap operation; abdominal MRI's do not necessarily detect endometriosis either. And why this type of scan was performed at all is beyond me given that it can give your doctor information about your liver, pancreas, and kidneys and other structures in the belly.

Originally it was thought my symptoms were GI related, but now they are pretty sure I have endo. Hence all the non specific tests!

Another question for everyone (and thank-you if you take the time to reply):

Do you have symptoms with every period?

My symptoms seem to come on for a day or so a week before my period. My actual periods themselves aren't bad - maybe a bit heavier than normal.

Hopeful bump

Hi all.

I am a patient at a fertility clinic and I was in clinic yesterday gettin a scan (I’m still on ovulation induction for pcos) it’s a nurse that been doing my scans a lot. Not sure why. Anyway she said my ovaries were really close together. I asked why she said oh they do move it can be normal. Until I came home and googled and it and it says this can be kissing ovaries - a severe form on endometriosis. Has anyone else had this? I can’t find anything online that says they can move and be normal! I do suspect I have endo but they don't seem to be resting or anything. I have a 4cm cyst also. Ttc for 2 years x

My sister is 47. 4 years ago (after years of being told her pain was her IBS) she asked for a scan. The scan showed a mass on her ovary. They called her back and said they were sorry but it looked like ovarian cancer and she was to have emergency surgery the next week. A four hour op later and she woke to be told the good news that it was not OC but endometriosis which has collected on her ovary. For 20+ years she was fobbed off by her gp and told time and time again it was IBS.
I am 49 and have had what feels like a life time of gynae and digestive issues. I have never considered endometriosis as I have never had much period pain but I have always had horrendous pain mid cycle/during ovulation to the point that it’s painful to sit, feels like my insides have swollen and are being pinched by some kind of internal metal squeezing contraption and lasts days. I used to bleed loads during ovulation too. Have always had ovarian cysts (once told one was a chocolate cyst which I’m now told is probably endo!). It also took me 4 years to conceive.
I am 49 now and starting to wonder if I have it?
I’ve been under the gynaecology depart on/off for years and not once has any gynaecologist suggested endo.
I have put up with years of heavy bleeding to the point of needing iron infusions. I had a uterine ablation 2 months ago which has completely failed as I’m bleeding more during my period.
All of this as well as awful IBS symptoms, maybe there is a connection?
What are your op?

I’m going for a laparoscopy soon to check for endo. Does anyone know if this would of shown up during my c section three years ago?