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Women's health

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Have i got endo? Medical professionals not listening

28 replies

UnderBlue · 30/06/2018 07:20

Hi,

For the past 4.5 years I have been suffering with severe severe period pain. More recently this pain appears outside of my period too, and I have severe cramps and bloating, and diarrhoea too sometimes. These are my symptoms:

Symptoms during period:

  • Severe severe abdominal pain for 2 full days despite taking pain killers.
  • heavy clotted bleeding
  • a very painful sensation sitting heavy on my vagina and on anus. Almost like a baby is pushing down on it?
  • a 10 day period, with first few days just spotting (which is abnormal for me).
  • feel nausea and sick (again didn't have that before)

Outside of my period:

  • severe stomach cramps and bloating especially in the morning
  • severe stomach pains during exercise
  • on and off diarrhoea
  • occasionally pain during sex

I have had a vaginal ultrasound twice and both times they said there were no fibroids or cysts and everything looked healthy. I got refered to a gynocologist and saw a registrar who said it just sounded like painful periods and I should either go on the pill or take taxonomic acid (neither of which are options for me; the latter i can't due to history of stomach ulcers, and the former, gives me mood swings).

So does it sound normal as doctors are suggesting or not? Should I again and ask for another referral?

OP posts:
Iputthescrewinthetuna · 01/07/2018 21:53

There are many treatments for adeno. However, none that I know of that are suitable for TTC. Pregnancy can get rid of it and it might never come back. (Although I was a rare case that it just made my symptoms worse)

The first treatment they were going to try was something called synarel. It is a nose spray that would put me through clinical menopause. This was cancelled due to me finding out I was pregnant.
I had my 3rd baby and decided I did not want to go down menopause route as I was only 30. I just felt it wasn't for me.
They offered me the mirena coil. This was not an option I would consider due to my cervix being affected by adeno. I am at the stage that I cannot wear a tampon, it causes ridiculous amounts of pain. (Drs were quite pushy with the coil)
I chose to try the Depo Provera. This is amazing! After 2 months my pain subsided, my 3-6 week periods went down to never having a period.
I am highly sensitive to the injection coming to the end of the cyle so my DRs allow me to have it up to 2 weeks early. I have to feel the pain though.
So before anything drastic if and when you are ready to try the depo provera. If this does not work ask for synarel, or clinical menopause.
As soon as the depo stops working I will be asking for the menopause.

The only thing that is a cure though is a hysterectomy. I will be going for that as soon as my children are a little older. I have a 10, 4, and 2 year old. Once youngest is at school I think I will ask for it.

I am sorry this does not help you as the injection is not an option for you at the moment. I hope there is information I have given you that might help in the future though!

I was found to have adeno after a hysterscopy.

FaithEverPresent · 01/07/2018 22:20

I only had a few spots (despite being in agony, unable to work despite very strong painkillers) so they got rid of it with diathermy.

CarlsRightEye · 17/07/2018 19:12

To be fair, I've been fobbed off for years but then told gp I needed a laparoscopy to find out once and for all! Locum doctors are usually easier to get what you want from 😂

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