In addition to being afflicted with Fibromyalgia syndrome, I also have a chronic and painful condition called Endometriosis. In a nutshell, it is the uterine lining, which is only supposed to grow within the uterus, growing outside of it, all over the place. From the ovaries to the intestines, it can go anywhere.
I was first diagnosed when I was 17 years old, in 2007. I began experiencing an incredible amount of pain after my menstrual cycles, and sometimes in between them. When I saw the gynecologist, he flat out looked at me and told me that I certainly did not have endometriosis. However, I wasn't taking no for an answer. When no other test yielded any results whatsoever, I went back and told him to put my mind at ease that I wanted a diagnostic laparoscopy. At first he didn't want to do it, but he eventually got a fellow doctor to perform the surgery.
Turns out, after the surgery, when I woke up, the doctor was standing over me, and sure enough said the words I already knew; "You have endometriosis." But I wasn't too sure where to go from there. Sure, I had the name of the illness that was causing all this distress and pain, but what can I
do about it? Birth control wasn't an option, because of the Fibromyalgia, it causes massive flares of that, to the point where I can't get out of bed. What
could I do? I can't do the traditional route.
I was referred to a reproductive endocrinologist, which I had seen at age 18. They gave me two options: try the medication
Lupron or get pregnant. Now, let me say, at age 18, getting pregnant was certainly the last thing on my mind. Even though I had a fiancee and we were getting married, I wasn't sure having kids so young was the greatest idea.
I couldn't get the medication, because it turned out to be $2000 a shot, and I needed two in total, and the insurance company wouldn't cover a medication that expensive, and with the way my luck had gone, there was no generic either. A couple of months later I had discovered that I was pregnant. Both joy and fear were felt that day when I found out.
The symptoms subsided for the nine months of my pregnancy, but three months after the delivery of my son, they came back rearing their ugly head worse then ever before. It has been two years since then, and I am still on the hunt for some answers. Surgeries and tests of every sort aren't yielding any results as to why the pain is
so intense. But I still press on. I have been refused hysterectomies because I only have one child. To me, that is
my choice to make, it is
my body. But sadly, many of the doctors that I have seen do not feel the same way. It's a constant battle, a struggle. It's not feasible to have another child right now. It just wouldn't be fair to the child. We don't have the money or a large enough place to live. I can barely take care of the child that I have now due to the pain. All I want is to have a small sliver of a normal life, to be able to play with my son without fear of repercussions.
Should doctors have the right to refuse a hysterectomy?
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Comments (13)
In response to this I feel like
a) it would be really bad advice to tell an 18 year old to get pregnant
b) having a child is a lot more expensive than $4,000 in the long run
That said, I really hope the OP finds a treatment that works. Life in chronic pain isn't something anyone should have to deal with :(
Endometriosis is awful! My doctor told me that the pain was normal and refused to do or refer me to someone else for a laparoscopy. It wasn't until my husband and I were trying to get pregnant for a year before he took my complains seriously (even though I had been telling him how terrible my pain was for 5 years!)
Anyway, I finally had a lap and I have stage 3 endometriosis. My RE wants me to keep trying to get pregnant naturally for a couple months, but he thinks I may need IVF.I know how hard it is to loose your job from this disease... I worked in
the trades for years (out of sheer stubborness!) but eventaully I had
to pack it in.
I had fantastic collegues who allowed me time as I worked
twice as hard as the other boys on my good days. It is so sad how
greatly this disease affects every aspects of our lives. I really hope you find relief hun. Vietnam travel
It's your body, yes. And I do think the two kids rule is a stupid rule.
But there are other factors to consider: You can go into early menopause, your libido can diminish, both of which are due to the lack of hormones. Many doctors have been sued by women who insisted on having a hysterectomy at a young age, and then realized that they still wanted more children. Not to mention the risk of infection, pain during sex, scar tissue, internal damage (think vaginal or fallopian tube prolapse). Healing takes forever. Most women are in the hospital for up to three days following surgery, and it takes at least six weeks to heal properly with no complications, and during that time period you can't lift more than ten pounds.
Believe me, I know it sucks being limited on what you can and can't do with your own body. But really, I think the doctors are looking out for you and your child's best interests. Your kid is still young, and being down and out for at least six weeks while you recover doesn't seem like the best route for you right now.
This makes very little sense to me. How many doctors have you actually seen? I had a hysterectomy in my 20's, in a very conservative state, and it was basically my choice because of my situation. And I've never heard of a doctor in these times telling someone to get pregnant, a gyno, for example, because they know it won't solve the problem. Our healthcare system sucks, and you've learned this because of pharmaceutical costs, but trust me, there is a doctor out there who will perform this surgery. Find a female doctor, and don't go surgeon hunting. And in the meantime insist on good pain control. I don't care if it's narcotic based. You have the right to feel better, and I wouldn't play games with a doctor over that one. I know women who've had the surgery who have NO children. Many women choose to have no children now days. It's our right to determine if and how many children we have, and how long we are going to suffer. I repeat: A female gyno.
Anytime anyone feels threatened by losing their job over a healthcare issue see an attorney and bring out the "Americans with Disabilities Act." Now, an employer find find a plethora of reasons for firing you, so it's not easy, but if you have good evaluations, and the only thing you can think of that's the problem is your health, you have a federal law in place that requires employers to make provisions for you. The employees have nothing to say about it. It's the law, and if you go before a judge with a stack of good evaluations, having been fired with a health condition, your boss will be the next one to go.
*hugs* Ouch! What a rough road, sweetie!!
Have you ever looked into natural or more alternative therapies? There are different dietary systems that have been designed for dealing with endometriosis (and many other menstrual difficulties) where you don't need to rely on hormonal birth control.
To the OP and @cobeeisgone@xanga -
This may sound silly but could it be possible that drinking around 3 liters of water daily for at least 2 to 3 months is helpful? I'm mentioning this because that did help with plenty of other conditions according to what I've previously read. Plus, it's a natural remedy. Make sure not to drink more than 4 glasses an hour, though, for there is such a thing as too much. Good luck with it all.
Hi there, I'm new to this site and your title caught my eye because I too had endometriosis. It was intense for me as well and couldn't do daily activities because the pain was so horrible ALL the time! When I talked to my Dr about it he to was skeptical about hysterectomy because i was so young,(i was 24 when diagnosed,im 27 now.) but I've had 3 kids already so they couldn't give me that excuse. So I tried the lupron, medical covered it, It didn't work for me. I was so frustrated I went into the Dr. and begged him to just do the surgery, im done having kids, and if it gets rid of my pain completely then im all for it. Last year I had my hysterectomy and I am now pain free! I am wishing the best for you, and i feel your pain! (the menopause sucks, but i can handle it better then the pain)
Im 24 and in school, and do not plan on having kids for atleast 3 years. I went to a endocrinologist who wanted me to get back on birth control-im not doing it cause the extra hormones making me crazy. I had a lap and my gyno burnt out all of the spots...did 9 months of the Lupron(dont ever do, it makes you completely numb to all feelings/emotions, and I almost ended up divorced from my husband. That also didnt help. So now Im going to a pain management clinic in a little under 2 weeks.
My understanding is that a hysterectomy does not always remove all the wayward uterine cells that might have migrated to your bladder, bowels, or other locations. It's a serious surgery, with possible complications, and even with the cervix and ovaries left in, sex is different, your hormones work differently, blood flow is different, organs sit differently in the pelvis, etc.
Has anyone suggested a low carb/high fat type of diet for you? I have had horrible periods all my life and wondered many times about endo. I have just about every symptom of PCOS/metabolic syndrome, except that I have gotten pregnant easily. Going on a low carb/high fat diet did away with most of my PMS and physical complaints. Until this past month when two of my kids had birthdays so there was a lot of cake (wheat! sugar!) and ice cream, etc. The foods we eat (and don't eat) contribute significantly to the health of our cells, and the performance of our various organs and systems. Eating the typical, American diet, (high in wheat, sugar, processed foods, preservatives, pesticides; low in omega 3, B12, zinc and D3) means that your body just can not function at it's optimal level.
I hope you find relief w/o a hysterectomy though :)
Many bad stories happened. How many doctors have you actually seen? I
had a hysterectomy in my 20's, in a very conservative state, and it was
basically my choice because of my situation. And I've never heard of a
doctor in these times telling someone to get pregnant, a gyno, for
example, because they know it won't solve the problem. Our healthcare
system sucks, and you've learned this because of pharmaceutical costs,
but trust me, there is a doctor out there who will perform this surgery.
Find a female doctor, and don't go surgeon hunting. We hope that every problem will handle well. Vietnam travel