The GOOD~ In some ways I feel so much pain relief, I don't have any of the uterus pain which was intense and I don't seem to have any endo pain either. YAY! No more worries about bleeding to death during my period. Sex life has been great, no more pain their either. Orgasms are different with the uterus and cervix gone but are still amazing. So with a highly trained surgeon there is hope for having pain relief from adenomyosis and endometriosis. Bladder symptoms are gone, no more feeling like I am getting a UTI but not actually having one. No more feeling like I am being stabbed to death during my period or like somebody is dissecting me using a blunt utensil.
The BAD~ A couple of UTI's during recovery. Still lots of abdominal swelling. Still lots of exhaustion, though nothing like before surgery. Ovaries have not been happy, beginning to wish I had them taken as well. PCOS is bad as ever, I had to pluck my mustache for the first time ever. And my nightly hotflashes are getting worse. I don't think the ovarian drilling helped, or not for long.
The UGLY~ Developed right groin pain at 6 weeks post op. Followed up with normal GYN, he thought there was nothing wrong, but reluctantly sent me for a CT Scan. CT Scan showed nothing. Endo surgeon said just wait it out and see if it goes away. Exercise has been impossible and it's frustrating that I am having so much pain. Numerous doctors appointments where it was suggested I had an inguinal hernia, first couple were wait it out some more. U/S was ordered but showed nothing (or so I was told by the regular doc). Finally I was able to get a referral to a hernia surgeon. In the visit to the hernia surgeon he had his nurse call the u/s radiologist right away because they must have got the measurements wrong. I assumed maybe this mean he saw something the u/s tech did not and there was indeed evidence of a hernia. Nope, I had a super swollen inguinal lymph node. This was noted on the u/s but said it appeared normal. The hernia surgeon said the dimensions given were way to big for a lymph node. A 2nd radiologist confirmed the size to be correct, and so the surgeon then said, is it multiple nodes stuck together? Nope just one node the radiologist confirmed. Concerned look on the surgeons face. So then we launch into questions and exam, he does not feel any hernia at all and since the CT Scan and U/S showed nothing he felt that there was no hernia and that the lymph node was causing the pressure and pain on the inguinal nerves. He said contact him in 9-12 months if it wasn't better. Ummmm so what just happened???? So now I move on to another mystery pain. Because of the location in the crack of my leg it is super painful, and I have now had it for about 2.5 months, waiting, resting, yoga, pushing through exercise, nothing is working. Then of course my regular doc is just now on maternity leave. I can't deal with training up a new doc on what is going on so I make an appointment with my old doc who is 3 hours away. You all know what I am talking about here, 15 appointments spent educating the new doc on all the issues, verifying shit that is already in your file, getting questioned on diagnosis's etc.. I want to say to doctors "Did you read my fucking file????" Winter road driving will suck, but at least I have less explaining I have to do for her. I think my family wishes I would just shut up and deal with the pain. It sucks to have a taste at a life without pain only to find something else wrong. Many women experience this though and so I know I am not alone. I am also not crazy! Family history of cancer has me totally freaked about about cancer, either in the node itself of that it is swollen as result of ovary issues or something else. My husband told me I needed to quit researching and googling things. But honestly if I hadn't taken my health into my own hands and done my own research, I would never have found a great surgeon and I would still be full of Endo, facing kidney failure in both kidneys and have an Evil Uterus. Looks like I will need a biopsy of the node at the very least. Maybe I am over reacting. But I did spend about 28 years trying to tell docs about my painful periods before finally getting justification and proof that the pain was not all in my head. I am also still getting supper swollen, still in elastic waist pants etc... I am ready for my life back.
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