I am desperately hoping that next Tuesday, July 5th, will bring me some sort of relief or game plan.
About a month after my daughter’s birth, my symptoms returned with a vengeance. I had hoped to be one of the women whose symptoms improve following pregnancy. But of course, I could never be so lucky.
The last year has been fraught with specialist appointments, trying different types of birth control pills to treat the condition, pain, and bleeding for weeks (and even months) at a time. Sometimes the BCPs would help with the pain, but then, they’d cause me to bleed for 12 weeks or more – every day. It was awful. So, we’d switch pills and try something else. I’d get temporary relief and then the bleeding would start. Finally, we tried Aygestin for about 6 weeks. It was awful, but it stopped the bleeding problem. However, I would start sweating profusely just walking across a room. Luckily, that was the worst of the symptoms, along with a 10 lb weight gain. Ugh. I did not need to be teetering on 200 lbs again, but I did…and over I went. Yuck.
When I last saw my specialist over 2 months ago, the options available to me were few. I could do Lupron again (which I’m strongly against due to the terrible weight gain I had on it the first time, along with the awful side effects); we could go back to one of the other BCPs I was on and see how that worked; continue on the Aygestin but at a higher dose; or, an IUD. Reading the literature on IUDs can be scary, especially considering that it can move and perforate your uterus. Normally side effects, etc., don’t freak me out; however, that exact thing happened to a friend of one of my sisters and once I knew it could happen and did, I was all set. So, I opted to go back on the BCPs. But, I also asked him about the possibility of surgery. I have done well with surgery and it usually provides me relief for a considerable time period. In an ideal world, my specialist would like to wait until we’re ready to try for another child (which won’t be for another 2 years or so). There’s no way I’m going to make it another few months, nevermind 2 or more years. So, he referred me to a colleague who is the head of minimally invasive gynecology/surgery at my hospital.
I made the appointment, which was 2 months out. Wow, what a long time, I thought. But then, I began to feel better. I had contemplated canceling my appointment because I was feeling pretty good. The pain was 5 or less (on a 1-10 pain scale) and for me, that’s manageable. But now, in the last few weeks, it has crept back up to a 6-8 range. I am so glad I didn’t cancel because now I’d be waiting 2 more months to be seen. I am hoping that he will agree that surgery is a good option. Nothing else helps at this point – not the non-narcotic pain pills; not the narcotics (which they usually don’t prescribe to endo patients because they fear they will become addicted); not a heating pad or water bottle; not the BCPS. Nothing helps.
So, until then, I am trying to patiently wait. I honestly cannot continue like this – it’s no way to live. I have gained weight because I feel awful and have just stopped caring about myself. I cannot enjoy quality time with my husband or daughter because I feel awful and just want to lie down all the time. If my appointment next weeks ends in the doctor being against surgery, that’s fine. He’s the expert and I trust his opinion. I have had so many abdominal surgeries and each time, the adhesions I suffer from, only get worse. So, surgery may not be the best option with regard to the adhesions. If surgery is a no go, I will have to look into getting into some type of pain management clinic. And if it is a go, the unfortunate thing is that it may be months before it happens. This doctor is a surgeon and he is primarily seeing patients in need of surgery. So, we shall see.