Thank goodness I didn’t rush into surgery! No, I’m not talking about my ostomy surgery.
One of the biggest issues I’ve had post-ileostomy surgery is gynecological problems which have impacted my periods and sex life. After seeing two gynecologists I was almost at the point of going in for a procedure to try and correct a retroverted uterus (tipped uterus) that was tilted towards the back. My doctors explained to me that after having ileostomy surgery in September, 2013 my uterus had fallen back into the cavity where my rectum used to be and causing my gynecological problems.
Surgery was the last thing I wanted. Particularly because the words “experimental” and “in theory” and “no guarantees” were used in the same sentence at the consultation. However, at that point I wasn't really given any other options. I had to question… Would I rather have painful sex and random periods for the rest of my life? Or... Should I risk trying surgery that may not fix my problems? Or even worse... Would this procedure jeopardize my ostomy? The pelvic area I’m talking about is located far from my stoma site, but you just never know. Plus, my poor body has been through enough trauma!
A few conversations with friends and family got me thinking. Surely there must be other women going through the same thing? I am not the first woman to have had a total colectomy, nor the first woman with a retroverted uterus. So I posted some queries on a few different online health forums. I know Dr. Google may not be as reliable as a real doctor, but surely the experience of others has to count. Someone out there must have some advice or options other than surgery.
I also spoke to my stoma nurse and she suggested seeing a specialized women’s health physiotherapist. I’ve had two appointments with the specialist and she is FANTASTIC!! After just one conversation I felt confident that something other than surgery was going to be the solution for me. She's dealt with numerous women with retroverted uteruses, but none of them displayed symptoms quite to the extent of mine. I had a feeling that something else was going on.
After some rather uncomfortable prodding and poking (nothing worse than I’m used to from the past six years with Crohn’s!) she could feel a significant amount of hardened scar tissue around the entrance to my vagina. “While some adhesions do not cause problems, others can prevent muscle and other tissues and organs from moving freely, sometimes causing organs to become twisted or pulled from their normal positions.” (thank you Wiki!)
Prognosis: The retroverted uterus is pulling everything in one direction and the scar tissue the other direction (some pretty far out angles) causing me painful sex and pooling of menstrual blood.
Solution (we hope!): Exercises to soften the scar tissue and stretch and expand the banding around the opening of the vagina, involving different sized dilators that look like they should be a lot more fun and enjoyable than they really are.
After just 3 weeks doing these “exercises” for around 5 minutes a day, I had already noticed a big difference. At my second appointment, the physiotherapist could feel that the scar tissue had softened significantly, but there are still some pretty abnormal angles. I actually got a normal period and was able to use tampons. I don’t even remember the last time I had a regular period with a natural flow, and I never thought I’d be so happy to have one! I still have a ways to go and it is by no means 100% back to “normal” yet (and may never be completely). Suffice it to say, I am incredibly happy (as is Michael) that I’ve seen such a big improvement so quickly, and without surgery!
Some people might find it odd or even offensive for me to talk about these sorts of things. I contemplated how much detail to go into or whether I should be writing about this at all. My conclusion... it’s important to be open. I’ve had so much trouble finding information and advice on this topic, and was worried that I might be the only person going through this. I hope this helps other ostomates who might be experiencing the same or similar problems, and encourages more discussion to know that you are not alone.
This post originally appeared October 19, 2015 on Stoma-licious.