Surgical help for endometriosis?

It makes me sad and angry to read or hear about women that have had surgery, that is supposed to make them feel better, but they’re in more pain afterwards. I know it happens, heck, it’s happened to me twice ( I can’t really count the surgery in between, it was more of a diagnostic lap). But why? Why can’t more doctors be taught how to excise endometriosis? Is it because they don’t want to learn something that will help millions of women? Is it that they just don’t remember the oath they took to help people? Is it that they just don’t care? Why can’t they admit endometriosis is over their heads? Why can’t they refer us to a better professional?
My first surgery in 2010, was to remove an endometrioma. I had no other evidence of endometriosis and no pain unless I bled. Then it was horrible. So many ER trips. I couldn’t sit up for a week after that laparoscopy. Very painful. That endometrioma grew back in a month. Pain was back. And I was referred to a reproductive endocrinologist, we were trying to conceive. I went back to my original gynecologist. He didn’t want to remove my endometrioma. He, like the other one, just said pregnancy will make it go away. All of it. Whatever.
I also couldn’t eat much and couldn’t finish half a meal. I lost over fifty pounds. I did look good though! I finally got the doctor to agree to do a lap to remove that endometrioma. Well, it had grown back and my insides were like cement according to him. He would need to cut me open. I went to him for 19 years, why wouldn’t I trust him? So I let him cut a Caesarian section line in my bikini area, (which a student stitched up and did a crappy job too). I was in a lot of pain and it got worse every month until, I was just in daily pain. My gynecologist’s answer, go get pregnant with IVF. Sure!
We went to the RE he recommended. After IVF and FET failed, I was referred to an oncologist by my reproductive endocrinologist. He also mentioned a Japanese doctor in NYC who was supposedly a specialist. Thank god he did. I’m so happy I went to see three different doctors before choosing the right one for me. I went to another specialist in NYC, and then went to see the oncologist. Both doctors were highly regarded and had performed many successful surgeries. I wasn’t overly impressed with either. The oncologist wanted to know what the RE wanted her to do for me and said she wouldn’t remove any Endo, just like the laparotomy I had the year before. (At this point I couldn’t even walk straight, I was hunched over in pain, daily). Then the specialist I went to performed one of the most painful exams, including a rectal, that I have ever had. Then proceeded to name drop and tell me I needed over ten hours of surgery to help me. But first, I needed an MRI and to see another specialist before the surgery. Mainly, these two, very capable surgeons only wanted to preserve my fertility. Then I went to the third surgeon. By now I had read everyone’s reviews online and was a bit frazzled and nervous. He sat with my husband and I and listened to both of us. We described the IVF, FET, and other surgeries I had. The pain I was having and that i could only take Advil. Then he took me into the exam room and I had a non-painful exam. I loved him already. He said he wouldn’t to a rectal exam knowing how much pain I was in and I thanked him for that. After the ultrasound, we went back into his office and he drew a picture for us of what a normal woman’s insides look like and what he said mine probably looked like (they were very different). He then explained that he would do two surgeries to help me. He refuses to keep a person under anesthesia for longer than 5 or 6 hours. Then he said the thing I needed to hear, “I want to give you quality of life, then we worry about fertility.” I signed up for my surgery that day. Five weeks later, in May 2012, I had my first excision surgery.
When I woke up, four and a half hours later, I cried for joy. The pain was gone. I had instant relief. I was a bit painful due to the urinary catheter for a week, but once that was gone, I felt pretty good. He couldn’t remove as much as he wanted to, because I had a ton of scar tissue from the precious three surgeries and I had a lot of bleeding from taking so much Advil. But I still felt good. Until aunt flow came for a visit. Then I had pain. Not quite as bad as it was, but it gradually got worse every month.
In September, I had number two. This one was over six hours and more in depth. I was in pain afterwards. He cut a lot out and I felt the difference. Plus the anesthesiologist was terrible. Once I recuperated from that surgery, I was great. My periods are still very painful and I was diagnosed with adenomyosis, which caused tremendous pain. But the daily pain was gone.
I had to have a third surgery, bit for the pain but for fertility purposes. The right Fallopian tube had filled with fluid and they wouldn’t let us do IVF with a hydrosalpinx/fluid filled tube. So in march of this year, I had the tube removes and whatever Endo was left. I felt great and went back to work four days later.
The anesthesia takes a lot out of us. I also think that anesthesia makes any Endo or other underlying conditions worse each time.
I am in excruciating pain every time I get my period. But my symptoms seem to be adenomyosis instead of endometriosis related. I am now seriously researching having a hysterectomy, with or without removal of my ovaries. At least that will cure the adenomyosis and the pain that brings.
I still cry for these women I know having surgeries, including complete hysterectomies and feeling worse than before and having more complications. My heart breaks. I know I’m lucky that my parents helped pay for my surgeries. I’m grateful the insurance I have covers 60% of my out of network doctor. I
pray one day that we can all have excision surgery 100% covered under insurances or at low cost.
For those endosisters reading this, the CEC in Georgia is accepting copies of your past surgical reports and doctors notes to review for free. Of you can’t go to them or another one do the handful of specialists, please send your info so they can give you hope!
Sending you love and light. And hope.

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About our last embryo

I have Endometriosis, Adenomyosis and Hashimoto's Thyroiditis. I've had Lyme, Bell's Palsy and the Shingles before I was 25. I've done IVF twice, with and without immunosuppression and FET. I am married to my best friend and I am Infertile.
This entry was posted in adenomyosis, anxiety, devastated, Endometriosis, endometriosis awareness, excision surgery for endometriosis, hope and love, hydrosalpinx, infertility, invisible illness, IVF In Vitro Fertilization, laparoscopy, laparotomy/c-section scar, positive thinking and tagged , , , , , , , , , , , . Bookmark the permalink.

3 Responses to Surgical help for endometriosis?

  1. Thank you for posting this. My specialist, Dr Dulrmba, is on the board with the CEC. He has published a book about endo and adeno that describes how meds affect the illness and how foods contribute to symptoms. I am thankful for having a specialist that knows so much and is “in network” with my insurance.
    I hate to say I “enjoy” reading your posts, but it is comforting to know that someone else feels the same way I do. You ask the same questions I do and have gone to doctors that don’t seem to care, as I have. It is a sad work we live in, when all of us have to suffer because of physicians that just don’t give a flying flip. You would think that a major break through, in a field where so many suffer, would be a good thing.
    Again, thank you for sharing your struggle. I think we all struggle so that we may help someone else. You are helping me and I appreciate it beyond words.

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