Does anyone have this problem?

[Sjac88]

Hi, I wonder if anyone else has experienced anything similar. I haven't been diagnosed with endometriosis, but the more tests I have done that come back clear the more I'm convinced I might. Its giving me so much anxiety and I just don't know where else to turn.

I have a lot of brown discharge before and after my period, either starts after sex or on its own. If it starts after sex it will lead right up until my period. I tend to avoid sex a week before my period to avoid it happening and getting upset about it. What's also strange is once it starts it could be the tinniest amount but seems to get worse by alot of movement or running. Has even triggered an early period.

I also get stitch like pains, stabbing, pulling cramping, but been told I have ibs due to having tenesmus flare ups (a constant feeling of needing to go to the toilet when you can't)

I've had no abnormal smears, recently hpv negative. 2 pelvic examinations cervix looks fine. Ct scan pelvic and abdominal, very tiny cysts found. 2 internal ultrasounds confirming the 2mm cysts

[MariaF2021]

Im sorry to hear you are suffering, it's really unpleasant and does affect your whole lifestyle.I've been through the works!

The only way to have an endo diagnosis is a laproscopy.

If you get a refferal to a gyne or if you have one already, demand a laproscopy, they'll be able to see if theres endo or anything else going on and they'll treat it whilst you're under general with it.

Do not let them palm you off. I kept on at them for ages and done my research and told them scans dont see it!!!

I hope you get answers soon! If you need anyone to talk or ask anything im happy to help x

[Sjac88 in reply to MariaF2021]

Thank you so much for your reply. I have a phone appointment tomorrow and I have said I would ideally like a referral to see a gynecologist as I'm having all these clear tests results but no answers to what else it could be🤞🏼 Hopefully they listen. And yes you're right, it affects you so much😔Always worrying about the next test/scan, doctors appointment, what they will find, what they won't and here we go again etc. X

[MariaF2021 in reply to Sjac88]

Bless you. Glad you have appointment booked in. Good luck and let us know what they do 🤞🍀💛

[hrcArch]

One thing I'm wondering is whether you might have adenomyosis rather then endo. Adenomyosis tends to cause pain after sex and can be characterised by abnormal discharge. Unfortunately, the only way to officially diagnose adenomyosis is through a biopsy of your uterus, but usually they can tell in surgery based on how soft the lining of the uterus is. There can also be signs in transvaginal ultrasounds, but not always, I think.

In either case, endo, adeno, or even possibly PCOS given the cysts, surgery is going to be one of the biggest ways they can start to identify whether those illnesses are at play. Endo can only be ruled out via laparoscopy (though it can, in severe cases, be diagnosed via MRI, as mine was). Adenomyosis is only officially diagnosed through a biopsy, but they tend to be able to tell from a laparoscopy and symptoms. PCOS can be officially diagnosed through 2 of the following: hormone tests, symptoms, or polycystic ovaries (which is usually seen through laparoscopy). So it sounds like a diagnostic laparoscopy is something to consider, and I would encourage you to make sure those doing the laparoscopy are going to look for evidence of all three illnesses rather than just endo.

[Sjac88 in reply to hrcArch]

Really appreciate your reply and helpful info, thank you🙃 I've never heard of adenomyosis before, but i've learnt to try and stay away from googling anything health related haha. Currently waiting for a letter for a third internal and pelvic ultrasound of the year, which feels like im just going round in circles. I always find it very difficult to push for answers when talking to doctors, but I do have a phone appointment tomorrow which I did say to the receptionist I want more answers or investigation on this so fingers crossed I get somewhere x