Possible Endometriosis: Hello, I'm new to... - Endometriosis UK

Endometriosis UK

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Possible Endometriosis

KeiraT profile image

Hello, I'm new to this site, and my GP thinks I might have Endometriosis.

She thinks this because I get severe pain in the pelvic area, I have difficulty with bowel and bladder movements to the point where I have to take half an hour or more to even go, I have lower back pains and side pains, i have difficulty having sex because it hurts to much, pains in my legs, random bleeding even when on the pill, constipation but also diareha, fatigue, mood swings, pains in random parts of my body and, recently, random nose bleeds and blood in urine.

The doctors put me on Diane, but because of chest pain, difficulty breathing and leg pain, she had to change it back to my old pill, Norimin, recently I've had an ultrasound in which they did a vaginal one, and poked at everything and said since they moved when poked, that it wont be enometriosis, but the next morning, I woke up with severe stabbing pain all over my pelvis, and am a bit worried, but anyway..

Just wondering if this could mean I have endo and adhesions, or what?

Sorry for the long post

17 Replies

I've been refered to a pelvic pain clinic, which when I told them it might be endo, the only man in the room laughed and said it wasnt that, which he ordered me the ultrasound, after having two previously, and wont do anything to help except inject me with anesthetic.

My gp doctor then refered me for a gyneo appointment at a different hospital, which was said to be in may, but now has changed to june/july.

I'm just hoping that i can get some help from others, and see if anyone else knows any options...

(p.s im in Western Australia)

Endo is a pain in the backside to diagnose it took me 5/6 years and it doesn't show up on scans, I have all the pelvic pain, painful sex, diareha when i first come on a period as normal I suffer from abit of constipation! I had hundreds of ultrasounds and they all came back normal I had one the day before my diagnostic laparoscopy and it was normal yet when they did my laparoscopy they found endometriosis on my urethra abit on my bowl and now they think ive got it on my bladder, push to have a laparoscopy done hun and good luck

I asked the pelvic pain clinic, and they said no, theyd rather try the anestetic injections.

It just sucks how appointments get moved without people being told :/

Thank you :) this has helped me realise that im not going insane haha :)

I have no idea what the anestetic injections are as am in the uk, I know the feeling but my appointments been brought forward so ive taken someone else's appointment while they have been pushed back, I thought I was going insane at one point aswell and then when I was diagnosed I thought phew

I think they're just morphine or something lower in effect, and i have no idea why they wanted to inject me:/

haha, well, its good that you have an appointment sooner, hopefully I get diagnosed soon :/

Strange, and yeah am sorta happy as ive got lots of problems going on atm am waiting to go to my go appointment at the moment, you have to keep going on and them to get diagnosed thats what I did for 5/6 years x

Yeah, I know :/

Sucks that while your in pain, you cant really do anything normal till your diagnosed :( x

Am diagnosed and I still cant do anything normal atm as am in too much pain :(

Naw :( im so sorry :( it sucks how it controls your life even when you try to make it not effect you :/

Hopefully they help you :( doctors suck when they dont know what to do :/

I know yeah I dont sleep because of it so I hope I can get some sleeping tablets and some new stronger pain killers

Yeah hopefully :) I'm on endep AND seroquil for anxiety, and they knock me on my ass haha so Im lucky in a weird way i guess, but sadly, i cant take any stronger pain killers because reactions or other medications :(

hopefully the docs give you some though :)

KeiraT - the drug Diane-35 is oestrogen - you should not be on anything with oestrogen if you suspect you have endo. It will make Endo worse. Endo lurves oestrogen.

This adds weight to your suspicions that you have endo if symptoms got worse when you were on it..

The Norethisterone (Norimin) is much better for anyone with endo.

You need to have a laparoscopy done to see what the situation is inside. Everything you describe is screaming endometriosis. Keep on bugging the medics till you get a laparoscopy. It's the only way to be sure.

What does your medical insurance provider say about this? Have you contacted them direct to locate an endo specialist surgeon through them?

You have to battle to get the diagnosis and keep on battling. Meanwhile check any meds that are prescribed to you and avoid oestrogen in anything. Best of Luck.

KeiraT profile image
KeiraT in reply to Impatient

The DIane worked for a bit, but then I got more naesus and tired, and had signs for blood clots, but the norimin is still letting the pain come through,

I currently dont have medical insurance because My partner and I dont have the money for it.

Its just difficult to keep battling when they say your insane :/ but im hopefully getting there :)

You can't get well enough to get fit for going to work without a diagnosis and appropriate treatment. If it is endo - it will NOT get better without surgical intervention, and the longer you leave it the worse it gets - the more damage it does, and you risk ending up with a lifetime of paying the consequences. The quicker endo is attacked and you take steps to manage the disease the better your outlook will be for the future.

With each monthly period bleed - your endo is bleeding and causing more damage and spreading. Not to mention making your very existance utterly miserable.

You could set up a funding account and ask relies to donate to it as and when they can. Use it to buy medical insurance and pay for medical expenses until you are well enough to stand on your own two feet financially.

There is nothing to stop you paying back the money at a later date when you are well enough to get a job, or if you cannot get a job, well enough to return the favours in kind, like doing chores for the family members & friends tht you feel you owe a favour back to.

Dog walking, baby sitting, gardening, decorating and so on.

it is a battle- and you have accept help from anyone who can help in any way.

KeiraT profile image
KeiraT in reply to Impatient

I have a very bad relationship with my mother (abusive) and my father doesnt have much money because of his new family, which i understand.

My partners parents have finacial difficulty already, so I dont really want to ask them.

And i dont have a good relationship with aunts and uncles because of rarely seeing them.

I've been thinking about getting private, but my partner and I have been trying to figure out if we are able too, and not everyone can afford health insurance, and its not because of pride, its because of understanding that people need money. :/

And,also, just because you have private health insurance doesnt mean youll get a diagnosis sooner, even private doctors take a while to believe in Endo, so its a bit silly to pay for health insurance, when your going to get the same answer, though then again it is stupid to wait so haha XD

I can't help you with the medication query as I have not heard of it, just wanted to say big hugs sounds like you are having a pretty rough time at the minute x

KeiraT profile image
KeiraT in reply to

Thank you xx

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