Anyone with MRKH?

[Gem_gems]

Had an external ultrasound today after severe pain and it looks like I have endo on my left overy. Just wondering if anyone else with MRKH has this and if so what the next step is likely to be.

[Impatient]

There are a small number of us ladies on the forum with mullarian deformities down below... but that doesn't stop endo. It can grow anywhere. Some treatment options like mirena coil can still be used, but require general anaesthetic, and specialist surgeons to insert the coil and to remove it when the thing runs out.

Given how painful they are to insert, that is to our advantage..to be knocked out before hand.

Your next step will be to discuss the scan findings with a gynaecologist. Then between you decide what form of treatments you want to try.

At this point you should try and push for a diagnostic laparoscopy (key hole ) surgey through the belly button to make sure that you do have endo and map out where it is at present, and hopefully have enough time in theatre for them to cut it out or laser it back (if it just shallow endo.) There isn't much point trying any of the chemical treatments if you don't know for certain you do have endo. They could end up masking the problem when what you need is diagnosis and excision of the endo. Read up on the various treatment options for endo on the endometriosis-uk website and any other websites that provide info about endo.

Speak to your GP about getting stronger pain relief to tide you over till you get surgery. Over the counter pain killers are not enough for endo pain most of the time.

Endo might only be in one place and cause agonising pain, or anywhere else or everywhere else and not causing much discomfort at all. if you only end up with endo just on the one ovary and the other one is fine, then it might be worth the surgeon removing that one rogue ovary taking out the endo with it. You can get by with just the one very easily.

It is a huge subject to read up on, because it can affect so many different organs and tissues, but it is definitely worth doing your homework and taking notes and also writing down any questions you might think of in the coming days, so you can ask the gynaecologist when you do meet him/her.

Best of Luck getting this pain properly diagnosed and in the meantime get he pain under control with the right pain meds.

[A_Wolf]

My cousin (basically sister) suffers from MRKH. I do not know the condition of her internal organs, but do now that she can not carry a child full term and it breaks her heart. I read though that it can cause skeletal issues as well, along with what you have posted... I am concerned that her condition is causing part of her neck and back issues that she faces daily (only 9 hours of sleep over the past 3 days, because the pain is so bad). She is only 28, and it breaks my heart to think that she may have to deal with this for so many more years to come. I hope you find some relief Andie! Thank you for sharing your story. It helps me understand what she is going through better. She is very tough and stubborn, and hates talking about it. <3