Need some advice

[marmiteginger]

Hi all,

Im new to this forum and im looking for advice.

I havent been diagnosed with endo yet but the gynaecologist thinks thats what the problem is. Im currently on Provera tablets which stop my periods all together, until recently they were really helping but in the last few weeks i have been in alot of pain despite taking them correctly.

Last time i had my appointment the gynaecologist was very eager to put me on hormone treatments which i wasnt keen on- she mentioned injections etc- they eventually settled with provera which i have to finish in about a month. I already suffer with mental health problems and i didnt want to risk messing with hormones affecting that.

Im 19, and they REALLY dont want to do a laparoscopy because of the risks, ive done alot of research and understand exactly whats involved in the operation, ive watched videos of an operation etc, but getting the docs to give me a laparoscopy is so hard! I dont think they understand how much it affects our lives! I used to be able to walk for miles and now Im in pain just doing a little bit around the block-but its seriously affecting my life.

I want a laparoscopy (I know it might not work) but the docs dont want to because of my age. Can anyone give me any advice what to do?

Im also extremely tired all the time- i have to nap after walking around the block etc- i dont know whether its related to endo or not.

Any advice will be greatly appreciated.

Thankyou!!

[SalWatson]

The laparoscopy generally will only diagnose whether you have endometriosis or not. They can't do all that much depending on how advanced it is. Not sure how they diagnosed endometriosis without doing the op. If you have a lot of pain you should insist on something being done. You can't live like that at your age.

[marmiteginger in reply to SalWatson]

Yeah, ive been for a couple of appointments, and they first thought it was IBS (it wasnt) and now they are just trying to give me hormone treatment. They havent diagnosed it as endo but they think thats what it is- but are refusing to do the laparoscopy- i have an apt in july with the gynaecologist- ive said to them before that im happy to have the op and thats what i want but they just keep fobbing me off and giving me hormones. I dont know how to get them to do the op- they keep saying Im too young. Its like they dont want to diagnose anything and just let me get on with it but i wont settle with that. Ive had an ultrasound and everything was normal but obviously endo doesnt show up on a ultrasound. Theres a family history of endo too- they just dont seem to care and keep giving me more drugs!

[NJG_98 in reply to marmiteginger]

I'm so sorry to hear this, i'm 18 next week and waiting for a gynae apt. complain to pals maybe, I work at a hospital and you have the right to be treated within 18 weeks from referral or first apt, and if you think you're being treated badly you can put in a complaint. our ages should not matter, this is a debilitating illness to have

[marmiteginger in reply to NJG_98]

I hope you get your appointment through soon! I didnt realise that we had those rights. I will bear it in mind. Age shouldnt matter at all! Hope you can get somewhere with your gynaecologists.

[NJG_98 in reply to marmiteginger]

Every patient had the right to start treatment within 18 weeks so definitely speak to pals if you're concerned that they're not giving you the right treatment or choices best wishes x

[JeanOsborne]

Hi, i would go back to GP and tell them you want to see a different consultant. You have the right to know what is wrong and the only way to diagnose endo is via a lap. Once this has been done you can then decide on what happens next. If it is endo my advise would be , to get a referral to BSGE centre were you can be seen by a specialist and get the correct treatment. General gynaecologists are notorious for missing endo or not recognising it in all presentations. So even if you do get a lap with general gynaecologist and it comes back negative don't give up ,get referred to specialist. You know your own body and if you know something is wrong don't give up.

Unfortunately you really do have to fight sometimes to get what you need.

The earlier endo is treated the better so you are not to young for a lap. Good luck

[marmiteginger in reply to JeanOsborne]

Last time I went for my gynae apt i saw a different gynaecologist from the 1st one which i wasnt very happy about! I have another apt in july not sure which gynaecologist ill see.

I was looking on BSGE website last night and found the closest one to me, but im not sure how to be referred- do i just ask my gynae or gp? I wasnt sure if it was under NHS as well- i cant afford private care.

Thats what i thought, i think they are just worrying about the risks of having an operation but i want answers!

[JeanOsborne in reply to marmiteginger]

Hi ,you need to get GP to refer you. They are nhs but some also take on private as well, so you won't have to pay.

It took me nearly 30years to get a diagnosis as I gave up in my 30's because no one would listen to me.

It only came about because I had had been ttc for 4 years with no success and GP suspected fibroids so sent sent me for ultrasound. This showed a 6 cm endometrioma, which grew to 11cm. Further ultrasound with a specialist showed severe endo and possible adenomyosis.

Had TAH,BSO and excision in March this year. Feel so much better.

Don't give up , it's not easy and there will be days when you will feel like it but in the end it will be worth it.

If you have the right surgery with the right surgeon you could stay pain for many many years and may not need further surgery.

Good luck and I'm here if you want to talk.

[Hidden]

Hey,

Theres a lady on here called lindle who has the information on her page if you click on her name.

There is a lot of other good information on there also.

Kind regards

Rose