All the insanity, Lack of Updates!

Well life got away from me and blogging just didn't happen. So here is a brief recap since my last post.

Surgery #2 with Dr. Dulemba also known as a second look surgery to break up newly formed adhesions was a success. Another wonderful experience at the hospital and with the addition of the scopolamine patch before surgery there was no vomiting. It was over an hour long as things were already stuck back together again.  By now it was obvious menopause had hit and I was started on .625 mg of Premarin.  I did not feel as well.  When I got home it took about 2 weeks of horrible hot flashes, body aches and just feeling horrible before my body adjusted to the Premarin.  It also made me super nauseated. I even ended up in the ER for fluids because of it. So I tried the patch, which the insurance will only cover the generic, which doesn't stick as well and so after almost 2 months of trying that  I gave up and went back to the Premarin, this time with increased dose and the nauseated feeling was much less. One of the biggest issues of the patches is no hot baths, and frankly I couldn't even shower without it coming off.  Such a pain!  So now I was on 1.25 mg and finally feeling more human. I had no idea how different surgical menopause was than natural menopause and it has been trying to say the least.

Then I started having episodes that felt like appendicitis. Was in the ER twice for it. In April they admitted me to the hospital sure it was appendicitis. Scans of course showed nothing but the pain, nausea and vomiting didn't subside.  After 3 days in the hospital the general surgeon agreed to open me up. I wanted her to remove my appendix, I was convinced it was my appendix and Dr. Dulemba even felt it was the culprit and regretted not removing it.  When she got in there she released a couple of adhesions not even on the same side as the pain and burned (WTF??) a spot she felt might be endo and then left my appendix stating it looked fine to her.   I ended up with a blood clot from all the IV pain meds in my arm and that vein is now ruined.  Things seemed to settle for a bit, but then it started all over again. The general surgeon said you are still healing its healing pain call me in October if you are still in pain.....I wanted them to at least do a colonoscopy.  So for a while I just continued the pain cycle, every couple of weeks I would have 3-5 days of appendicitis like flares.

This eventually got old, this was not healing pain or additional adhesion pain, in addition to this my burning groin pain was happening at the same time.  So I reached out to another Endometriosis specialist, one who was added to the list on Nancy's Nook after my surgery with Dr. Dulemba otherwise I may have gone to him to begin with. Dr. Adam Duke was only 3 hours away in Post Falls Idaho.

So I called and made an appt. for the end of June.  I will write a separate post about my initial consult. 

Also in March my 15 yr old daughter had surgery with Dr. Dulemba as well, her endo was severe, he said it was one of the worst cases he has seen for somebody her age, she also has polycystic ovaries and adenomyosis.  Such a horrible diagnosis for such a young girl. She had excision, which ended up being almost total peritoneal excision, a presacral neurectomy for the adenomyosis and ovarian drilling.  Her endo receptors were equal estrogen and progesterone.  Her second look surgery her ovary was stuck to the side wall.  She is feeling better, but with not a lot of option besides hysterectomy for adenomyosis she is stuck living with some pain.  She of course hates the pain and heavy bleeding and wishes she could just have a hysterectomy.  Its a tough decision for sure.