Next week I am off for a follow up appointment with my gynaecologist. I have to admit; I am quite apprehensive (more on that later). However, I thought it was a good opportunity to write my first blog post about SEX!
Before Crohn’s disease, I would say that I had a pretty “normal” and “regular” sex life. Now everyone’s idea of normal is different. For Michael and I, having been together for around 12 years at the time I was diagnosed, let’s just say we weren’t exactly going at it like rabbits every 2 minutes like we were at the beginning of our relationship! Once or twice a week on average seemed to be relatively healthy, and was our “normal”.
Roll on IBD, and that idea of “normal” quickly changed. As anyone with IBD knows and understands, dating and sex can be difficult, on a number of levels, and for many reasons. A lot of the time you simply feel too unwell. The symptoms of IBD take over and limit your sex drive and desires. You have stomach and other aches and pains, diarrhoea, nausea, or are just plain too tired.
I personally had huge issues with my body and confidence as well. When I looked in the mirror, all I could see was a puffed up moon face and moustache from high doses of steroids. I had lost so much weight that I no longer had any curvaceous womanly curves – my bottom was flat as a tack! Michael would always say how beautiful I was, but let’s face it, when you don’t feel beautiful or attractive yourself, sex is not on the top of your list.
Aside from body conscious issues and feeling too unwell, my biggest fear was not being able to control my symptoms. I was terrified that I would literally poo all over Michael in the middle of the act. I am sure there are some weirdos who might get off on that (each to their own!), but that is not my idea of fun in the bedroom. The nightly enemas Michael had to help administer were also not my idea of foreplay, and I am sure did not get him in the mood either!
During the 2 to 3 years that I was really unwell with ongoing Crohn’s flares, I could probably count on one hand the number of times we had sex. Sadly, this became our new norm. Of course there are other means and ways of being intimate, and we tried to replace sex with other things, but they are not always as intimate as intercourse can be.
Sex is not the be all and end all, but it is an important part of any relationship. I am so fortunate that Mikey and I had been together a long time, and were older and more mature. If I had been diagnosed when we first met in our late teens, I’m not sure he would have stuck around if he was only getting laid a few times a year! Snuggling up holding hands on the lounge or spooning in bed expressing our emotions in words became our new way of showing intimacy and affection. It’s amazing how much tenderness and love you can show through a passionate kiss, and how close a warm embrace can make you feel.
All that said, since having surgery and now feeling so healthy, we are ready to go at it like rabbits again!! No more anal sex though as we would often joke before the surgery!!! I well and truly have my sex drive back, and Michael isn’t complaining! And sex with a stoma isn’t an issue for us at all (I will write more about this in future posts).
The problem is, I now have a severely retroverted uterus.
Admittedly, I was pretty slack in keeping up regular pap smears over the last few years. It was the last thing on my mind. I was spending enough time at the doctor’s office as it was. I wasn’t getting regular periods, but I put most of that down to the Crohn’s and weight loss, and my doctor’s told me it wasn’t a major issue. Still, I should not have neglected this.
Since surgery, I have had several pap smears. One came back with some abnormal cell changes and I had to have a colposcopy just prior to going overseas. This has since come back all clear, however the medication I still take (Imuran) has been known to lead to higher instances of cervical cancer, so it is incredibly important that I maintain regular tests.
Now, almost 2 years since surgery, I still don’t have normal periods, but I have a rather unusual discharge. My regular gyno sent me for all sorts of tests, thinking perhaps this was due to surgery complications, or possibly a fistula. I even had a CT scan where they injected the dye into my stoma (now that was interesting!). Everything came back normal, so I have since been referred to a specialist gynaecologist who after some investigating advised this is all due to a retroverted uterus. This is actually quite a common issue, and approximately one quarter of women have a retroverted uterus of some degree.
Basically this means since having my colectomy and ileostomy surgery, my uterus has moved and dropped back into the space where my other organs used to be (namely the rectum), and is now sitting right up against my lower back (instead of over the bladder). This is causing a blockage to the menstrual flow and effectively a pooling effect, and inside is almost at a right angle. So as you can imagine, sex is quite painful (and messy). Not for lack of trying!
We have been told that conceiving should not be an issue, although I would likely need to have a caesarean, not a natural birth. However, if I’m not menstruating properly, and have trouble having sex, is this even possible? We are not sure at this stage if we want children, but it would be nice to know if it is even an option?
Hence my pending visit to the gynaecologist. We are going to discuss options. There are ways to prop the uterus back up to its natural position, but this would most likely mean surgery. I am not sure I am ready for more surgery. My biggest concern is doing anything that might jeopardise my ostomy (it is currently working very nicely thank you!). I don’t want to risk anything going wrong with my stoma, but I also want a normal sex life again!
I am trying not to admit it, but I am a little freaked out about it all. We are hoping there might be some less intrusive options that don’t require any surgery. Either way, I think we’re going to be in for more decisions and contemplation after this appointment. I will keep you posted. Wish us luck, Laura x
More info on retroverted uterus: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Retroverted_uterus