Then came Maranda and her Jolts & Jollies blog. She was participating in Operation Layla (http://operationlayla.org/) which is a wonderful website designed to help a lovely lady named Layla with endometriosis afford the operation she needs. Maranda posted on J&J about my struggles with Endometriosis (Endo) and polycystic ovarian disease (PCOS). She made me remember a lot of important things about these diseases and what I've learned from suffering from them.
I read about Layla on operationlayla.org. I told Maranda how touched I was (and am) that she posted about me in relationship to a cause about which I feel deeply. I asked to be put in touch with Layla and Maranda set up an "introduction" via email! Layla and I emailed each other and then I kind of dropped out. It is a very raw subject and sometimes I cannot open that Pandora's box of pain. But, today, I emailed Layla back and I realized that my journey with Endo, PCOS, infertility and chronic pain would be the focus of my blog.
I've met many women who suffer silently from these diseases. Medicine knows little about the causes or cures; all they know is that Endo and PCOS are autoimmune diseases. Yet, medical science can cure erectile dysfunction. Now, that's a diatribe for another blog.
Back to the subject at hand. What are these diseases, most people want to know. Well, in two words, they suck. Since they are diseases of the autoimmune system, inflammation is a serious cause of the pain. These diseases cannot be caught but are inherited. Some sisters, cousins, aunts, etc. may be effected while others in the family do not suffer. I want to make these diseases ones that are as commonly talked about as breast cancer. I want more research on these diseases. Before you read further, take the time to educate yourself on these diseases.
- Endo: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001913/
- PCOS: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001408/
It's been a difficult reproductive road. I was diagnosed with Endometriosis when I was 24. It was painful, so painful. I was told there was a possibility I would have problems getting pregnant. The doctor told me to get pregnant asap! As if, at 24, I was remotely ready to have a child!
The pain of Endometriosis was excruciating. I tried hormone treatments: continuous birth control, 8 different kinds of birth control, medically induced menopause. All this, especially the menopause, made me a bear to be around. My hormones were crazy and I couldn't even stand myself. No matter what my doctors and I tried, the pain never left.
As for doctors, I fired 5. Mostly, they were not supportive. They blamed stress (i.e. hysterical female) and when nothing worked, they became frustrated with me! The only relief I had was when I had surgery to remove the endo lesions and the adhesions from the previous surgeries. It was a vicious cycle, but it would leave me pain free for a year and a half at the most. That was better than what I'd been going through. By the time I was 30, I'd had 6 surgeries.
The worst surgery was right before Christmas of my 27th year, 2002. I was having the worst pain of my life (as time progressed, my pain threshold would increase so that worse situations wouldn't hurt as much as this hurt.). I could not turn, walk or sit comfortably. This was and has been par for the course, but this time it was much, much worse. The pain made me vomit and feel freezing. I had been to the doctor and had an internal sonogram; they found a mass on my left ovary. They did not know if I had cancer and we made an appointment for Monday to start testing. That was a Thursday. By Friday, the pain reached maximum capacity, I was rushed to the ER. The doctors took me into emergency surgery. What they found was awful.
There was a 7 cm cyst going straight through my left ovary. Both ovaries were full of large cysts. (This should have been a clear diagnosis of PCOS, but no.) The cysts were removed; my left ovary was cut open, cyst removed and sewn back together like a baseball. I had lost 1/3 of my ovary. Additionally, there were terrible adhesions (tough scar tissue) and Endo lesions everywhere, even on my bowels. The cyst was a chocolate cyst, full of blood clots. If it burst, a clot could have gone into my lungs, caused and embolism and killed me. The removed the cyst, the endo lesions were lasered off and I was stitched up, the recipient of a 3 inch scar and two one inch scars on either sides from the tubes. This was surgery number 6.
My doctors were still useless.
I finally found a wonderful doctor whose wife suffered from endo, too. He diagnosed me, at the age of 31, with poly cystic ovarian syndrome. If my previous doctors had discovered the PCOS sooner, the following would not have happened.
I had another surgery to remove more cysts and endo. Number 7. And little relief from pain.
During this time I had begun a masters in secondary English education. It was a joy to go to school! I went doubled over in pain frequently, but I did not stop. When I had surgery 7, I was taking summer classes. I missed only 2 days of class and was mad at myself when I got a B in that class. As a friend pointed out, I got a B while recovering from surgery. I guess. I should have gotten an A.
But I digress. During grad school, I went to New York City to consult infertility specialists. I got devastating . I would never get pregnant. My eggs, because of the hormone imbalances of PCOS, do not mature into viable eggs. I was told that my PCOS was at Stage 4. To put that in perspective, if it was cancer, I'd be terminal. Stage 4 is the worst stage. There was only a 60% chance of conceiving without hormone treatments. I went back home in horror, anger and anguish. I wanted to be a mother intensely.
The pain continued. It woke me up in the night, made me sick. The cocktail of drugs I am that help ease the symptoms needed to be increased. It made me sicker. I lost 30 pounds in 2 months because I couldn't keep food down.
I was scheduled to have surgery # 8 in December 2009, during Christmas break. I was in my first year as a teacher and had gone to school everyday, pain or no pain. I went in for surgery with the agreement and understanding that if the right ovary (which was the source of constant pain) was not viable, it would be removed. I just wanted it gone but my doctor wanted to see if it could be saved.
It could not.
The right ovary was so full of cysts and heavy that it had twisted in on itself and was stuck to my pelvic floor with scar tissue (the infamous adhesions). It had to be removed or it would become necrotic, die and poison me to death.
I woke up one ovary short and feeling strange.
Over the recovery periods and for several months after, I felt like I was losing my mind. Mood swings were terrible; it was body getting used to one ovary producing estrogen and that ovary getting up to speed. It eventually evened out.
The loss of the ovary had a weird effect on me. It was necessary, I knew that and that was why I wanted it gone. But there was a hollow in my pelvis that could sense and feel. I began to feel like less of a woman while i adjusted. My anger at my situation grew steadily. How could this happen? Why? Why? Why? I cursed God and was an absolute bitch to be around. People would say condescending things such as the doctors don't know everything, you're worrying too much, and my favorite: are you sure you can't have kids? People can be callous and I wanted to punch them all when they said such things.
The PCOS and Endo was resounding repercussions throughout my life. I had lost a job due to how much sick time I took, my husband left me because he couldn't bear the thought of child not his own (there were also other reasons we divorced) and I lived in pain. But battling these diseases also gave me new perspective. If this is the plan, then maybe I am supposed to adopt. There are children who need a good and loving home and that I can provide. It's also made me more compassionate toward people who suffer. Oh and I don't hate God anymore, but that's another blog, perhaps. I still get angry and cry but I try to make lemonade out of this situation. Maybe I can help other suffers and help those who love us understand.
These diseases are autoimmune diseases. We who suffer may look healthy and act healthy most of the time. We may gain weight (PCOS makes our bodies think we're diabetic and hold onto every calorie. I gained a LOT of weight, it sucked, tried everything but WeightWatchers is the only thing that has helped me lose weight). The hormone fluctuations may bring on depression, anger, bipolar disorder, etc. They may cause our joints to swell and ache. We have to conserve our energy and get lots of rest. They affect every aspect of our lives. We may have to cancel dates or outings at the last minute due to pain and sickness. People may not understand and start to drift away. Then, we are alone, all alone to deal with these diseases. We find out who truly loves us because those are the people that stick around, no matter how miserable we feel. Those are the people that matter and are the gold in our lives.
Dealing with PCOS, endo and infertility is exhausting, challenging and depressing. But it makes me enjoy the good, healthy days all the more. Ironically, I feel blessed. I know who my friends are, realized with much greater understanding how wonderful and loving my family is and seen what I can endure with grace and humor.
I am happy to say I have only been in the ER for pain twice since my last surgery! But I do not have insurance; I'm an unemployed teacher. I am trying to navigate the world of government health care.
I hate insurance companies. It's easier to insure your car than yourself. I've been turned down because of my pre-existing conditions. Also, the rates these companies charge are criminal. They are bloodsucking leeches who thrive off pain and misery. They should be ashamed of themselves.
Ok let's end on a happy note! Today, I am in a relationship with a wonderful man who wants to adopt. I do not want to do fertility hormone treatments because my mother is a breast cancer survivor. I do not want to make my child a potentially motherless child.
As I said before, there is not enough known about these diseases. For years, they were attributed to being "hysterical females," stress and anything else doctors who were out of their depth chose to blame our symptoms on. Most times, it was blamed on us.
I believe that we suffers need to share our experiences and gain support from each other. Just knowing that you're not alone means so much. These diseases take away our quality of life, hopes of natural motherhood and sense of being female. I want to create a community of wonderful women to support each other in our suffering. Join me.
Any woman who suffers and those who love her are welcome to comment and be a part of my blogging journey! I welcome you all!!
Thank you, Maranda and Layla, for giving me a purpose and a cause for my blog.
Love,
Christina
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