Thank Goodness I didn’t rush into Surgery

No, I’m not talking about my ostomy surgery. As I’ve discussed in previous posts, one of the biggest issues I’ve had post my ileostomy surgery are gynaecological problems which have impacted my periods and sex life.

Some people might find it odd or even offensive for me to talk about these sorts of things. ‘Nether regions’ are off-limit subjects for some. What goes on with our vaginas is personal and private, and I’m not one to talk with gusto about what happens in the bedroom to many people, let alone on a public website! 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 always said no topic is taboo on here. Plus, I had so much trouble finding information and advice, I worried I might be the only person going through this. I hope this helps others who might be experiencing the same or similar problems, encourages more discussion and assurance that you are not alone.   

Back to the case in point, and the details!

After seeing 2 different gynaecologists I was almost at the point of going in for surgery. Thank goodness I didn’t!!! Doctors advised that surgery could be performed to try and correct my retroverted uterus (which has fallen back into the cavity where my rectum used to be). They thought that my now shifted uterus was what was causing all my problems.

Surgery was really the last thing I wanted, particularly given that the words “experimental”, “in theory” and “no guarantees” had been used in the same sentence. However, at that point, I hadn’t really been given any other options. I had to question, would I rather have painful sex and random periods for the rest of my life than risk trying surgery that may not fix my problems, or even worse, jeopardise my ostomy? I know the area we’re talking about is fairly far removed from my ostomy site, but you just never know. Plus my poor body has been through enough trauma for the time being!

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 got online and posted some queries on a few different health forums. I know Dr Google may not be as reliable as a real doctor, but surely experience of others has to count. Someone out there must know something and have some advice or options other than surgery.

Thank goodness for Peace & Harmony! A few years older than me, based in the US, having had the same surgery as me, it sounded like she had almost identical gynaecological issues going on. And she had had some great success (after some insistence on her part I might add) through seeing a physical therapist in the US.

I spoke to my stoma nurse who suggested a specialised Women’s health physiotherapist based a bit closer to home in Sydney. I’ve had 2 appointments with her now and she is FANTASTIC!! Even after just talking with her I felt confident that something other than surgery was going to be the key. She has dealt with numerous women with a retroverted uterus, but none of them displayed symptoms quite to the extent of mine.

Something else was at play here!

After some rather uncomfortable prodding and poking (nothing worse than I’m used to from the past 6 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 –> some pretty far out angles –> 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 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 physio could feel that the scar tissue had softened significantly, but there are still some pretty abnormal angles! She suggested I jump from a size 2 straight to a size 4 dilator. When looking at them next to each other I decided to take baby steps and just move up to a size 3 for now!

 And just the other day 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 way to go and it is by no means 100% back to “normal” yet (and may never be completely). Suffice to say, I am incredibly happy (as is Michael!) that I’ve seen such a big improvement so quickly, and without any surgery!!!

Onwards and upwards!!

Laura x