OBGYN thinks doing a laparoscopy isn't necessary and just take orilissa instead.
For context,
Back in 2024 I had a hysterectomy due to adenomyosis. My obgyn at the time said she also suspected Endo and would check and remove it if I did. When I woke up she told me she found endometriosis on my uterosacral ligament on the left side (which is where my pain was) and that I had a lot of adhesions which she mentioned was odd since I had no prior abdominal surgeries. I felt very validated. However, pathology came back positive for Adenomyosis and negative for endometriosis for the sample she sent off. She told me it's common for pathology to mess up the sample or that there wasn't enough sample to catch it but that she did believe I had endometriosis. Slowly I started to have pain come back on that left side. It started on my lower left side and went down my left leg. Over time it has progressed and gotten worse. It now is unbearable some days. It's extreme nerve type pain on the left side. It gets so bad I can't lift my left leg because of how painful it is. My foot gets tingly. My primary care doctor said it sounded like endometriosis was somewhere close to or on a nerve. And she felt like I needed to have a laparoscopy done to check and remove it. She put me on gabapentin and I take ibuprofen daily just to get through the day. It's not cyclical pain. I don't have periods because of the hysterectomy so I can't really track it. It's just daily pain with a huge flare every now and then typically depending on how active I am.
Ok, so there's no "endometriosis specialist* near me. Can't find one. Just OBGYN that also does laparoscopies. I've called, checked, can't find out. I found a Dr 30 minutes from me that's an OB and on her profile it says she has endometriosis herself and treats women with it. She does robot assisted excision surgeries. I figured she was my best bet. I went to her today.
It didn't go exactly how I thought it would. She said she read my file and saw that pathology was negative for endometriosis. And I explained what my previous OB said about pathology and she agreed that does happen. But that she only saw one spot on the uteralsacral ligament and that was 2 years ago so she doesn't think much has changed since then in the short amount of time. I showed her where the left side pain is and how sometimes it feels like it's ripping. She said hmm that's right where your ovary would be, I wonder if it's stuck. I mentioned how my ob found a lot of adhesions during my hysterectomy. And she said yeah that's super common with endometriosis and that's probably what's going on, you have some adhesive around the nerves causing inflammation and nerve pain. Then she said she doesn't think laparoscopy is necessary and that I should just take birth control. I told her how I don't do well with birth control (it causes deep depression, suicidal thoughts). And she continued to push it until my husband spoke up and said I don't think you understand, she wanted to kill herself last time she tried an IUD. Then she said ohhh... Ok we can't have that! Nevermind on birth control. And then said in that case you should do the Orilissa. It's a hormone blocker so no artificial hormones. And it's reversible if it doesn't work out.
I said but if I have a lesion or adhesion pulling the nerve wouldn't it be better to do surgery and free it and then try the hormone blocker? And she said yeah that could be a good idea. Or, there's a chance I go in there and don't find anything or remove some adhesions but that's no cure and it will all grow back so we can skip that step and just go straight to Orilissa.
But I just can't help but think there's no way that's going to fix nerve pain if there's a physical cause for the nerve pain? Am I crazy? Or is that what I should do? She told me to call the office to schedule surgery or ask for the prescription. And that it was up to me. But I don't know what to do.