Cannot get a diagnosis. Please help

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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14 Replies

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  • 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

  • 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

  • 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

  • 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

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

  • 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

  • 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

  • Hi - I know we regularly complain that our doctors know little about endo but if a GP really thinks a hysteroscopy diagnoses endo then god help us all.

    The ease with which you get a referral will depend on where you are in the UK. Where are you located?

  • 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

  • That's good news that you are in the UK as you have many rights.

    This consultant sounds worryingly uninformed and it so illustrates how women are treated so badly in general gynaecology by people who simply don't have a clue either about endo itself or the treatment process. There is an NHS protocol to be followed which requires that you are tried on hormone meds for 3 - 6 months then must have a diagnostic lap. If hormone meds are inappropriate as they are when you want to get pregnant then you should be offered a lap straight away to diagnose, identify and remove all endo. This is particularly important when you want a baby because endo might make it impossible to conceive. It may be blocking your tubes or you may have scar tissue pulling your tubes and/or ovaries out of position. The tubes have a fringe of tissue at the end (called fimbriae) that swells just before ovulation to cover the ovary and sweep the egg into the tube. If your ovaries or tubes are pulled out of place it will be impossible for this to happen and the poor eggs will just float off. You may also have endometriotic cysts on your ovaries. A lap is not just to remove endo but to improve fertility and we would hope any gynaecologist might know this.

    Back, hip and pain with sex can indicate endo behind the uterus which he should also know and the very first thing in his mind should be a lap. However, this is best carried out in a specialist centre and as you are in England with access to NHS Choices you can choose where you go.

    Click on my name and have a look at my post on how to find a specialist and if you want help writing a letter to your GP detailing all these rights and saying that you will be exercising them can you send me a private message. x

  • 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

  • Be sure to take copies of the pages from NHS Choices that confirm that you can choose who you see. x

  • 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!!!

  • 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

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