When you’re in horrible pain, you get desperate. You want whatever help is being offered, even if it’s questionable or scary, because you just want the pain to stop. I know that feeling all too well.
Over and over again throughout my life I have been that afraid, that desperate. Most recently, this happened when I was having pelvic pain so severe I could hardly walk. It started during sex one night. Not to get too graphic here, but as he pumped, it felt like he was hitting something inside repeatedly. I sometimes have pain associated with sex, both before and after my hysterectomy, but this was different. Afterward, I lay there clutching my groin area for a long time. I cried myself to sleep thinking — hoping — that the pain would subside by morning. Only, that didn’t happen. I tossed and turned all night, barely sleeping, and when my husband awoke the next morning, I told him I think we ought to go to the ER.
After laying there for hours in pain and going through the usual tests, the doctor came back empty handed. He thought maybe my endometriosis was back, so instructed me to follow up with my OBGYN. As I was driving home from the hospital, I called my doctor and made an appointment for the following day.
Early the next morning, I waddled into the clinic and told my gynecologist about what happened and what was going on. He suspected my endo was not to blame, but perhaps some scar tissue had torn. I know from previous experience that tearing scar tissue is uncomfortable, but not this painful. Still, I was suffering and wanted help. So, when he offered to inject some numbing agent into the area, I accepted. If you’ve read any of my previous stuff, then you know that I have trypanophobia (fear of medical needles) and yet, here I was, willing to let him put the biggest syringe needle I’ve ever seen into my vagina to numb my insides. Talk about desperate.
Holy cow did it hurt! And it didn’t help at all, in fact it made things worse. I left there and cried in my car for half an hour before finally being able to drive back home. I waited 2 more days for the pain to go away, but alas I couldn’t get that lucky. I called back over to the OBGYN and he basically threw his arms up in the air. There was nothing else he could do. So, I made an appointment with my primary care physician to see what ideas she might have.
I literally cried walking into her office because walking hurt so badly. She felt horrible, but had no clue how to help. The best she could offer was to assist me in finding a professional who could. We made follow ups with my gastroenterologist, neurologist, and even my rheumatologist. And for the next month, while I continued to have horrible pelvic pain, I had to have a multitude of appointments to try and fix it. That never happened.
The gastro wanted to do a colonoscopy, but it had been less than a year since my last one and I wasn’t having any abnormal bowel issues. Even she said that where my discomfort was, there was no bowel or intestine. In fact, there were no organs over there, so it was a mystery as to the culprit. (I’d had my appendix out in 2019) Yet, she offered the colonoscopy as a way to rule things out. I denied the offer.
The rheum suggested I go back to the ER, but I thought for what? For them to poke and prod me some more, just to tell me what they’ve already told me? No thanks. She agreed with my neurologist’s plan of action, instead.
My neuro’s diagnosis was that it was my Tarlov Cysts putting pressure on nerves and causing mayhem. I was having nerve pain in my belly button and tingling in and around my vaginal area, in addition to stabbing in my groin, so this sounded the most likely. He was very concerned and ordered a surgery to be done asap.
Yes, this sounded likely, yes I wanted to get rid of this pain, but was I THAT desperate? To do a surgery which may or may not fix the problem? I wasn’t 100% convinced and that’s why I cancelled the surgery. I went to see my orthopedist instead. I couldn’t help but wonder if it was my SI Joint or hip causing the issue, as when I sat too long, the pain would increase and certain positions seemed to relieve that new onset.
I ended up getting a pelvic CT, x-rays, an ultrasound, the injection in my vag, 2 MRIs, 3 sets of blood work and urinalysis, and tried 3 different meds in order to get relief. I also did end up going back to the ER after blood mysteriously started appearing in my stool. I got an SI injection that went horribly wrong and had to have paramedics come to the house to check on me. It put me back in bed for another week and half. All in the name of desperation.
My sacral MRI showed that the cysts were bigger, so that’s definitely something. But after waiting this long, I realized that my hip was worse than ever. I noticed this once I started walking again. It was subluxing and dislocating way more often and was pretty uncomfortable. It got to the point that I could no longer differentiate between the hip and pelvic pain; it was like they radiated into one another. Then, I finally got the results from my hip MRI and behold: a while new problem! I have hip dysplasia, arthritis with bone spurs and a torn labrum. Now I’m set to get a hip replacement at 33 friggin years old. It’s so fun having EDS.
Anyway, this may or may not be the answer to my pelvic pain. We won’t know until after it’s done. But this pelvic pain has been an ongoing problem since my hysterectomy in 2018, it’s just never been that bad before. It was because of this continued discomfort that I had the second laparoscopic operation in 2019 that didn’t fix the problem. But after that night of love making? It had never been like that before. The sharp, terrible pain lasted more than a month before starting to settle down again. Now it’s back to where it was before: bothersome but bearable. I’ll keep you posted on what happens going forward, however as of now, these are the answers I have to work with.
Desperation is a funny thing. It makes you do stuff you wouldn’t normally do. I’m just glad I didn’t let it drive me to do a surgery I wasn’t ready for. Especially because it might not have fixed the issue at all. Yes, that operation will still probably need to be done in the future, but for now I feel more confident in the hip replacement. I guess that’s because I’m not desperate any more. Hmm… Food for thought.
Far From Perfect 