Undiagnosed and Upset!

[Giraffe17]

Hi everyone,

I’ve been struggling with my periods since i started them when i was 10. By 12 i was on the p.o.p because i can’t take the normal pill (just my luck). I went back and forth trying different contraceptives and here i am now.

Two years ago I finally said enough is enough and asked to be referred to a gynaecologist. Long story short i had a million scans, ended up with a huge hemorraghic ovarian cyst and switched to a different gynaecologist.

I have all of the signs and symptoms of endometriosis, but when i went for my laparoscopy there was nothing there!!

They put me back on the mini pill and sent me on my way, but now the problems are resurfacing.

I have no idea what to do or what is actually wrong with me. As i write this I’m having a “period”, if you can even call it that. I had a period, 3 weeks later i had another one, 2 weeks after that i had another one!! Now, a week and a half later I’m having another.

I’m so fed up and don’t want to go to the GP because i feel like they’re just going to say that there was nothing on the laparoscopy so there’s nothing wrong with me, even though i know there is.

Has anyone else had this kind of issue?

[AllthatGlitters]

Hi Giraffe17 sorry you are going through such a hard time to get a diagnosis. It’s not easy and it’s all about finding a supportive doctor. I have been lucky as I have a female doctor who took me seriously and referred me to gynaecology.

My periods are like yours, no pattern to them, can last a few days or weeks. Clots, flooding and being anaemia. What are your other symptoms?

I ended up going on the list for a laparoscopy via the NHS however it was taking too long, months on end and I was never getting a date so I decided to go private for my consultation (cost me £220) and I also had my laparoscopy privately. You can however have the consultation and pay for that yourself but remain on the NHS list for a laparoscopy.

Did you see a specialist when you had your surgery?

I believe they can miss endometriosis.

I don’t have endometriosis but I do have adenomyosis and have been told by my consultant that the symptoms are very similar. I was diagnosed this via MRI.

Can you go back to the doctor and take someone in with you for support?

It’s your body, you know when things are not right & you have to live like this so don’t be fobbed off. Even change doctor until you get referred x

[Giraffe17 in reply to AllthatGlitters]

Hi Allthatglitters thank you for your response!

My main symptoms are:

-horrific period pain (back and ovary region) which makes me vomit

- painful intercourse

- irregular periods

- seemingly constant pain

- bowel problems

Basically all the usual stuff!

I went to a gynaecologist but not an endo specialist.

Did you request the MRI or were you referred from a specialist?

I’m going back to the doctor soon with my mum (I’m 19 btw), but finding the time with work is a nightmare.

I’ve been considering going private but O don’t think I can afford it..

Thank you for getting back to me, it means so much x

[Reggiefelix17]

I’m

Sorry your going through that it’s horrible I know that it’s so complex !!

See I have regular periods every 4-5 weeks but I have stage 4 endo on the Bowel awaiting a op after my laparoscopy in nov

I’m at this moment in bed doubled over with terrible bowel infection and my endo nurse was suppose to call this week but nothing ....

I can’t belive this condition is so complex and effects us all so differently ,

If you haven’t had any mris I’d say that may be your route now

[Giraffe17 in reply to Reggiefelix17]

Thank you Reggiefelix17!

I’m so sorry you’re going through this right now, my thoughts and prayers are with you x

I agree, I’m going to see if they’ll send me for a hysteroscopy as well to double check - this whole process just takes forever and is so disheartening!!x

[Angellouise]

I’m so sorry you are going through this. My daughter has had the same thing , laparoscopic surgery showed nothing. She has had the lupron shot which helped for one month and now she is back to having bad periods that will not stop and has had ruptured ovarian cysts. I hope you get some answers. We are going to see the third Gynechologist to see if she has any answers.

[Giraffe17 in reply to Angellouise]

Bless her, i hope she gets a good one! x

[Thecraftyadder]

Endometriosis can be missed by a general gynecologist. Mine was during my first laparoscopy in my 20's Apparently it can start off microscopic so when you are young it can be harder to spot. I ended up seeing a specialist privately in my 30's as symptoms were getting worse and worse. He found deep infiltrating endometriosis and scarring. I didn't know about this illness in my 20's. I had the lap due to pain and a cyst. If I'd known more I'd have kept pushing for a diagnosis.

You definitely should get a second opinion as its not normal what you are suffering. If you could find the money to see a specialist privately you could get advice about your options and ask for a referral back to the nhs for treatment. Just don't give up on finding an answer. It took me 18 years and I wouldn't wish that on anyone!

[Giraffe17 in reply to Thecraftyadder]

That awful! It’s shocking how little people know about this. Do you think it would even be worth pushing at my age?

[Thecraftyadder in reply to Giraffe17]

Its sounds like you are struggling on the pop so I'd say its worth speaking to a specialist. Even if they don't want to try more surgery they may have other treatment options or pain control ideas for you.

[Giraffe17 in reply to Thecraftyadder]

I’m going to go back, it all feels like a bit of a waste of time though because I doubt they’ll do anything

[Thecraftyadder in reply to Giraffe17]

Id see someone better qualified. I found my specialist by looking up the nearest BSGE endometriosis centre, seeing the consultants and then googling them to find out were they had their private practice. I paid £180 for the initial consultant. It was a relief to be listened to. He suspected endometriosis. Told me things about the illness and discussed treatments. If you were able to manage that you might get better advice.

[Giraffe17 in reply to Thecraftyadder]

I think that may be my only option at this point😩

[StefaniaJW]

If you have a huge haemorragic ovarian cyst and they cut you open and found NOTHING, they are not endo specialists. I've said this over 100 times on this forum but it's never enough. You need to have an endo specialist perform excision on you. If you get it done by a non-specialist, you'll just waste time, energy and possibly get worse after surgery. If you need to get names of endo specialists in your area, get back to me