Cannot get a diagnosis. Please help

[em16780]

I am 35 and have two children, 6 and 3. I have always had heavy periods. I suffered two miscarriages before I conceived my second child. Since giving birth to my second child my periods have been very painful and heavy. I flood a lot and have 7-10 day periods every 21-23 days. Sex is painful. I have horrendous back and hip pain that travels into my stomach and groin. When I bleed I get symptoms of urine infection but urine samples are clear. I pass clots, bright red blood, brown blood and tissue.

I was referred to a gynecologist 5 months ago and had a hysteroscopy and an iud fitted. My symptoms are now worse. Saw him yesterday for check up and told him. He said my only options now are endometrial ablation or hysterectomy. Asked for a laparoscopy, he refused and said Endo treated with hormones i.e. coil. Went to GP today and asked for referral to another gynecologist for second opinion. She refused and said hysteroscopy was clear, Endo would have been apparent there. I want another child😞 and I'm in agony x

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[JeanOsborne]

Hi Em , A hysteroscopy only looks inside the uterus. Endometriosis is found outside if this. Most GPs know very little about endometriosis. She cannot refuse to refer you. I would try a different doctor or write a letter of complaint to the practise manager. Also make sure you are referred to a endometriosis specialist centre (BSGE) which is nhs, as most general gynaecologist don't always recognise endo and is left untreated. A hysterectomy or endometrial ablation won't cure endo. Good luck

[em16780 in reply to JeanOsborne]

Thankyou Jean, I don't understand why it is so difficult to get any answers. I will see another GP. I explained to the GP today that I didn't want to take progesterone as I tried a progesterone only pill before and it made me so angry and miserable but she prescribed it anyway. They never listen c

[dawntildusk in reply to em16780]

hi em. i am 35 and also have similar symptoms to yourself. i have endometriomas and also suspected adenomyosis. i am due an excision lap for the endo but it is likely to be adeno causing my worst symptoms. i too have been offered a progesterone cerazette pill. at 35 i know this limits what they can offer as there is a higher risk of blood clots. i would try to get an mri of the pelvis as this is what has confirmed mine. if u r still having problems they cant refuse you help. good luck x

[em16780 in reply to dawntildusk]

Thank you dawn. I tried cerazette a couple years ago and I turned into someone I didn't even recognize. I was so angry all the time and had to stop it. Thank you for the help x

[dawntildusk in reply to em16780]

the cerazette didnt help me either. although the bleeding was less i ended up bleeding constantly.

[Tboag]

I would get a different GP, this one clearly dosnt know what she's on about, but first, print of the diagnosing description and the symtoms list from the endometriosis nhs website, take this in with a list of your symtoms, and a copy of the BSGE list with the one closet to you high lighted, tell her unless she can say for sure (based on what you have presented her with) that it's not endometriosis, then you want a referral, other wise tell her you will be complaining to the surgery manager,

If you know your stuff and have the above with you, she can't refuse,

Have a look at a lady called Lindle, she has written some good posts,

Good luck and don't give up xxx

[em16780 in reply to Tboag]

Hi tboag, thank you for suggesting printing off the symptoms. Every one will be highlighted. I have rang the gynecologist secretary and demanded they remove the iud as I'm sure bleeding every day is making my symptoms worse xx

[em16780]

Hi Lindle, I am based in Torquay, Devon. Just read about the gynecologist I saw and his main area of interest is non invasive techniques x

[em16780]

Thank you so much for all this information Lindle, I am so grateful for the help. I will go back to another GP with my list of symptoms and centres. If I still get nowhere I will then write a letter x

[em16780]

Hi all, I have finally managed to see a GP who thinks I have valid reasons to want a laparoscopy. He is now sending through a request for second opinion, may have to wait some time. Just hope the next gynecologist I see agrees I need a lap!!!

[Laxx]

Hello Hun I'm like you had children would like another but my periods are heavy,painful and most of the time unbearable and miserable ..i have to stay still for days at a time and can not shout ( which my oh loves haha it's not funny) im sorry you going tho a bad time it's not far is it take care xx

[635703]

The urgent priority is pain management with the GP, so you feel human and can cope day to day.

Also go to google and search This Endo Life, there’s natural stuff listed there with science behind it. Her podcast is amazing too. There’s a recipe book for the Endo diet, which helps with pain. (This stuff takes a while to figure out as we are all different).

Ring the endometriosis.uk helpline - see website for opening times first. Get their guidance on next steps, explain your situation.

They can check your hospital is a BGSE registered Centre and you see an Endo Specialist Gynecologist.

You need to see someone who can excise (cut out) the Endo. This is preferred method over ablation as there is greater risk of scar tissue or complications. (Someone correct me if I am wrong).

Saying this, ablation was what I had during my first lap. Felt like a new woman 2007-2018 after my lap and then had a Mirena in a few months later.

Sending you my sincere and heartfelt best wishes for a shit situation to get better ❤️‍🩹

You’ve got this 💪🏻💛

We are here for you 💗

[635703 in reply to 635703]

Just saw this was 3 years ago LOL 😆