Since my last post in March 2013, after my second surgery for endometriosis I have been through hell and back. My endometriosis continued to spread and cause pain and my doctors all but ignored my declining health.
December 24th 2013 I wrote my surgeon a letter to express my discontent. I did not feel that I received the care I needed, especially from one of the physicians he had trained. I felt betrayed and was still suffering immensely; I was left to fend for myself. According to them, if I wasn’t willing to take huge doses of endometriosis, nerve or antidepressant meds, then I wasn’t worth their time. I was a lost cause and they effectively ignored me. I really felt lost in the Endo world once again.
When I wrote the letter to my physician, I was at a low point in my life. I hated my job; the stress was so high that I could barely cope. I was on and off medications prescribed by the pain clinic, in addition to those prescribed by my family physician. The side effects from all of these meds were so bad I could not function at work. I would cry at a drop of a dime. I was sick every day. I had to deal with stressful things that I should not have been put in the position to do. I felt like I was losing my mind.
Unexpected Compassion
I can’t remember the exact date, but sometime late January 2014 I got a phone call that changed my whole life. I wasn’t expecting anything, just to vent my frustrations. The nurse intern to one of my original surgeons called me. She said that she had spoken to the surgeon and was told to call me to say that “there seemed to be some misunderstanding” regarding my care. Umm no; there was no misunderstanding, as far as I could tell. The care was bad and they disregarded my continued pain.
She wanted me to come in for an appointment. I was hesitant. I had seen this physician so many times and left his office crying on many occasions over the last three years that I could not see willingly enduring any more appointments. How could I withstand yet another appointment where I was pushed to take more drugs that did nothing to alleviate the pain, while making me suicidal and depressed?
I eventually decided to go to the appointment, because in Canada we have no endometriosis specialists. He is the only one.
I had an appointment with this physician the second week of February. I saw my GP a week before. I felt like I was losing my mind. I needed something to help. She suggested Prozac. I was reluctant, but desperate. I could barely get out of bed, I felt disassociated from my body and felt that I just wanted to end everything. I was suicidal and psychotic.
The following week, I saw my surgeon and he did indeed try to push me onto some fancy, new med that was used for fibroids but was started to be used for endometriosis as well. I pretty much tuned him out. None of these meds work and the side effects are often worse than the original disease. I felt that no matter what I said, he would not listen. I started to cry. It was at this point, his nurse intern, my angel, spoke on my behalf. I am not sure whether it was her job to advocate, but she did and I am forever grateful. From our conversations on the phone and prior to this appointment, she knew what I wanted and expected to have happen. She wasn’t going to let me leave that office without having been heard. When I stuttered or began crying, she stepped in and said what I wanted to say. She held my hand, gave me tissue and had the empathy of someone you would expect to have when they too have experienced life with endo. It was a first for me, her compassion. In all of my 24 years of dealing with physicians and endometriosis, she was the first caregiver who expressed compassion.
Reading this in December of 2018. I am finding solace in reading other people’s stories. I am due for surgery for my stage 4 endo soon. I am scared about what the dr will tell me when I wake up. How are you doing now? It’s been 4 years since your last post.
I had my hyst. in June 2013, it does get easier! I am not 100% symptom free but it is much easier than what I was living with before. diet and exercise help, which exercise before was merely turning on the heating pad 🙂 good luck!
Thank you so much for disclosing your very painful battle. To this day there are far too many people who do not believe that endometriosis takes such a huge toll physically, mentally and emotionallly – and then add on that just as many think that a full hysterectomy/oopherectomy is no big deal and of course that it is s cure all for endo and why don’t we all just go do that? It does help in a lot of cases and I am glad it helped you, but of course it is not a simple decision or solution and I know you certainly don’t consider yourself “cured.” I am grateful for fellow patients who share their stories and give a voice to the millions who either cannot or feel that they cannot speak up for themselves. Even in 2014, it’s a gamble, and you are brave to do it, and I thank you.
2 years ago I had a hysterectomy because my endometriosis had gotten so bad & I have to say it was the best thing I’ve ever done. If only I had known the relief I would have had I would have done it years ago. I also had 2 very large fibroids removed
Yes I was pregnant in 2004 have birth full term. During pregnancy I felt amazing and after pregnancy things got worse. However I have heard that people are the total opposite of me so I really don’t know if it would help everyone. It took 1.5 yrs to get pregnant as well.
Endometriosis is an imbalance in prostaglandin metabolism. I suggest that you do research on your own to discover how this condition can be treated by an appropriate mixture of gamma linoleic (GLA) and eicosapentaenoic(EPA) acids.
Does endo go into remission, when you are pregnant ? And is endo an auto immune disease. I have pocos and fibroids, my fibroids were inoperable, they were so large, I wanted children, so I would not get the hysterectomy. I was on Lupron, for four months, which I hated, but it did shrink the fibroids, still I had twenty lbs of tumors removed I had a wonderful doctor who would not give up. He saved my uterus, the tumors attached to my kidneys, and every where. I did have to have invetro, and had twins. But after my pregency, I was much better. I still have fibroids and pocos, but am not in pain. The reason I have this lengthy reply, is I am asking if Angela has ever been pregnant? And if the HCG hormone, which makes your body think it’s pregnant, would help the endo, and send it into remission. My cousin also had endo and was infertile, almost had a hysterectomy, and went through invetro, and miraculiosly, got pregnant, and her endo went into remission, and she had three more spontaneous pregencies, and now she is ok. I hope thing work out for Angela.
I should be clear to many mentioning specialist. There are 6 in Toronto if I am not mistaken. Two are not accepting new patients, one is on indefinite sick leave and the other 3 are well versed but when it comes to complicated cases I wanted to stick to the surgeon who is a top excision specialist.
I can’t remember that Drs. Name. Is it Dr Valos or something like that? If so he does not do excision he only does laser. Not saying he is bad but he is not known as a too specialist in canada
I heard London has a new endometriosis specialist. I too have endometriosis with very bad pains. It has done a lot to my body as well. I have fibroids and ovarian cysts because of it. It is spreading into other body parts as well. It has affected my fertilities so for me to try get pregnant I have to do fertility treatment. This does not always work. I’m gonna attempt to try it if don’t succeed first two try I’ll be wanting hysterectomy. Doctors want to do a full one where they take my tubes and ovaries at same time. I had been on depro pervara for this past year and just got off of it few months ago. Depro did help me with the pain. It didn’t always help stop the flow but it did help the pain. I had the flow four times while I was on it. I can say I don’t miss having the time of the month. I know it’s not a cure and there is no cure for it but I found it did help reduce my pain a lot.
Thanks Rebecca
Catherine you are right she is out there. I should have wrote one of the only my mistake. For me in Ontario it’s one of the only. There are a couple that do specialize but not great excision surgeons in canada.
Christina was on leave for a bit also althought I heard she is back now. And yes I have heard great things about her.
That doctor is not the only Endometriosis specialist in Canada. Dr. Christina Williams out of the BC Reproductive Women’s Health Centre in Vancouver BC is the best specialist out there. She teaches all over the world to educate doctors on this disease.
Your story sounds just like me, except, I am yet to find that “angel” or the right surgeon to help. I have had a radical hysterectomy 3 years ago, and still suffer greatly from endometriosis along with Interstitial Cystitis. I have had IC for over 10+ years now, but it has flared up worse since the hysterectomy.
Endometriosis is ruining my life, I would not wish this on my worst enemy. There needs to be something done to make doctors truly understand the magnitude of this illness.
Thank you for your post, it gives me hope. And lets me find comfort knowing I am not alone. THANK YOU!!!
I am really happy to hear that. I am 3 months today and I am having serious nerve issues not sure if it is related or apart of another problem I have going on. Good luck on the rest of your journey.
I also had a hysterectomy in the fall of 2012. I had a real bad case of endometriosis, to were I had to have everything removed. Putting me in earth menopausal. But today I am feeling a lot better and back to being healthy. My doctor was amazing! My husband stood by me and loves me just as much.