Constant pain? Cysts? Endometriosis? Help - Endometriosis UK

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Constant pain? Cysts? Endometriosis? Help

Emma1994 profile image
5 Replies

I have always suffered from excruciating period pain (From about 13 onwards). They tried me on various painkillers that didn't touch the pain, it got so bad that for a good 8 days a month i was heavily bleeding/vomiting/fainting and having fits. In the end they put me on the pill, this helped slightly but I was still in a lot of pain - the pattern seemed to be the pain would slightly ease for about 5 months then id have to switch pills as it would gradually start to get worse. I am now taking cerezette.

I woke up on Wednesday 23rd April in the middle of the night with excruciating lower abdo pain (I couldn't move - it wasn't a period, an ambulance was called and I was admitted to hospital. I had urine test, blood test, chest/abdominal X-rays, ultrasound (tummy/vaginal) and various abdominal examinations. They said I had a retroverted womb, a heart shaped uterus and strange shaped ovaries, the lady doing the examination mentioned that it could be endometriosis but doctors didn't confirm. My left ovary looked ok but the right wasn't visible. They thought it may be appendicitis so transferred me to another hospital. I had a temp and low blood sugar so they put me on a glucose drip. I had various bouts of sickness/morphine for the pain. On the Thursday I had vaginal blood when wiping after urinating but no spotting after that.

They diagnosed a ruptured ovarian cyst and discharged me with pain relief. The pain/sickness continued over the weekend (followed by diarreah) and gradually got worse by Tuesday/Wednesday so my mom called 111 for advise, they sent me to an all night gp who said it could be appendicitis so sent me to a&e, they gave me morphine via IV which eased the pain a lot and did blood tests/urine test/rectal exam/abdominal exam and they all came back ok, they said my abdo was very tender. They said it could be constipation and discharged me but couldn't see any cysts when going over my ultra sound scan (despite one ovary being hidden) (I didn't think it was constipation as the pain felt different).

When I got into the car I felt very sick/fainted, I was re admitted to hospital and put under observation. They discharged me Thursday morning with 'a gyno problem' and told me to go to my gp and ask for a referral to the gynaecologist at the hospital.

I had a doctor appointment a few hours later, I collapsed in the waiting area after feeling very dizzy with pain. The doctor did a abdominal exam/vaginal swabs/vaginal examination/urine test and they said my abdo felt tender and I was tender in left side of vagina. The urine test picked up a urine infection so they gave me anti biotics and sent me awAy (without referring me to gyno at hospital) - I finished the course of anti biotics Monday and they did take the dizzy feeling away but the pain remained. I went to the doctors today and they said all the swabs came back clear, they did another vaginal examination and an abdominal exam- they said my lower abdomen was tender and I was tender inside my vagina. They said it could be cysts or could be endometriosis so have referred me to hospital (Awaiting a call with my appointment)

Is this endometriosis - the pains been going on for so long now and no one is confirming anything for me? Help/advise would be so helpful

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Emma1994
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Lolaloo profile image
Lolaloo

I could of wrote this!! I would say yes I have thought I've had endo for years like u suffered since 13/14 told I had pcos at 20 been in hospital 4 times with pain like u said been told ibs conspation colitis. On my last trip to hospital after being sent by gp after spending 2 days at home passing out with pain a ambulance coming to me to b told its quicker to go to gp then get him to refer me!!! Well I did and the gave me a full mot full ct MRI all bloods ultra sound in and out side! But you know what it's only cause I was showing infection and one of their questions was have I visited any of the following country's .... I say yes to Africa and then the seamed to do more than on other visits??? It may have been a coincidence but that's how it felt to me! So a week went by still in hospital to b told I have endo and large cyst just waiting for my op now! So it's only taken 24 years (now 38) to finally get something done about it and not be fobbed off with BIS when I think how many days off work I've had unpaid I should of paid to go private! But good luck to u Hun don't let them fob u off!

Emma1994 profile image
Emma1994 in reply to Lolaloo

Hi Lolaloo, yes they seem to have fobbed me off with so many things! First they said pancreatitus (Turns out this had been misread by the nurse and wasn't the case), then suspected apendisitus, then they decided on the ovarian cyst rupture (they just assumed as they couldn't see one ovary no actual proof), then they said constipation, then they found a kidney infection so left it at that, now they think cyst again but have mentioned endo but haven't confirmed. It's just so frustrating! I hand been off work for 3 weeks with this pain and they don't seem to be doing anything. Hopefully when my hospital gynae appointment comes they can do the laporoscomy x

Emma1994 profile image
Emma1994

Also, usually after any sickness/diarreah I have a bleed, I've had two weeks of sickness/diarreah and a few missed pills but still no bleed? This isn't normal for me as it only takes one day of diarreah to have a bleed. (I'm on cerezette)

mbClaire87 profile image
mbClaire87

In my honest opinion it sounds to me like ovarian cysts. In my lifetime Ii can literally count how many times i have painless menstrual period. But not until 16 I realised I was always having overboard pain and I will go numb it became now like a habit every time i was in my period I will just stay in bed till it was over. In the course of 2010 and early into 2011 i was marking my periods then for more than 3 months I had not seen my periods but i was not worried i coped with that till 2012 then in 2013 one morning in July I felt like the ibuprofen i took gave me a terrible abdominal cramp. But i was able to tame it till the next day not after i went for clinicals and 1 of my mates ended up taking me to the ER I could not stand, I could not talk, I could literally not do anything after a couple of tests done it came back i have ovarian cysts on both sides of my ovaries . Without any treatment of any kind but pain meds i am even very confused. I began reading online about signs, symptoms and possible treatment.I tried going on metformin yet i noticed i began having ototoxicity and after 3pm I could eat and entire fridge up. Now my goal was trying to exercise, eat right and loose weight but it is not so easy. I believe medical professionals walk pass the ovarian cyst diagnoses alot of times since it really has no set cure. For people who want kids there should be alternatives than hysterectomy. Just insist they do a through exam of your ovaries and uterus.Something might came out of it

Starstellar7 profile image
Starstellar7

If they can't see your ovary it may have (if you have endo) attached itself to adhesions/womb. I had a scan like that a few months ago and because of the endo it had attached itself to my womb.

I also had endo on my appendix and had it removed, it was very uncomfortable in the weeks before the op.

You need a proper laposcopy. They can't see much from the scans, so unless cysts are large it is impossible to tell.

Good luck and I hope you get some answers and are more comfortable soon.

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