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I will try to get straight to the point. I'm 26, am married with one child. We don't want anymore. I started my period on my 10th b-day and I've had horrible, intense, laborious pain every month since. I was diagnosed with endometriosis when I was 13, had a lap at 16, then lost m insurance at 18. I've been on every BC pill with NOTHING good coming from them. They put me through hell. I've been taking vicodine for pain since I was 12, nothing else works. I now also have PCOS & Fibromyalgia (that's besides the point). I have painful rupturing cysts that give me infections (suffering from one now).
My point is, I suffer so much and it's almost been 17 years of pure torture. I am so sick, with constant pelvic pain that I can't take care of my son at times and my 73 year old grandma has to. Not to mention I can't EVER hold down a job! This has to end and I want a hysterectomy!!! I JUST got health coverage. My question is, how do I convince a Dr to take me seriously enough to take this horrible, diseased organ out?
Hi Amber! I wish I had a direct answer. Your experience sounds much like mine!! It was over 20 years for me before I found a gynecologist that heard my plea and half-way understood what I was going through! Perhaps if you can find a gyn who specializes more in ... gads, I can't think of the word. A non-obstetric gynecologist. Being of child-bearing age, you may not get very far unless you do find a doctor willing to listen. I only say this because when I was having problems in my late 20's thru mid-30's, none of the gyn's I saw wanted to even deal with my bleeding and fibroids in any way. Hopefully someone will see this thread and be more articulate about the type of medical professional you might consult.
I wish you all the best and keep us posted on what you find out!
Do you have all the records (or can you get them at least?) from your prior surgeries, treatments, etc? Get as much history as you can gather, and put it in a folder.
Ask your friends and family for recommendations for a couple of gynecologists in your area. If you know any nurses who work in a hospital in a med surg or OB department, that would be great. Ask them who they would go to for consultations.
Take your records with you to your appointment, and then discuss with him or her your problems, the constant pain you have, etc. See what options are available to you. Then schedule a 2nd appt with another gynecologist and see what options they offer you. Then make your decision. It sounds like you have been through a lot the past 10 years.
I feel your frustration. Years ago I went to a female doctor thinking she could sympathize and offer me some options for my heavy periods. She told me to take Aleve......
I was young and not educated about my options at the time and just took her word that there was nothing that could be done.
When I finally learned about some options, I did not have health care. Birth control pills kept my periods manageable for many years. When I turned 40 though, I knew the pill was not the healthiest option for me. I had health insurance again and made an appointment with an OB/GYN.
I cried when I left there as he took me serious and already had the receptionist starting the process with the insurance company for my ablation.
When later I was having severe pain each month, he scheduled my hysterectomy.
My point is to keep trying different doctors until you find one that will listen. Get 2nd, 3rd, 4th opinions if needed. There are doctors out there who are knowledgeable about our options. He/She may want to try out a few other treatments first. Don't get discouraged about that, you do want the least invasive solution.
Thanks so much for your input! I'm seriously nervious about it all. I don't have records, it's been so many years and I wouldn't know where to look! I have an app with a Dr who will soon do my friends hyst (she's in her 40's). She said he's understanding. I figure, they will do a lap first and all, but I'm just so done with my uterus....I've broken up with it....our horrible relationship is over! Now I need someone to understand and let us part ways forever! =) I wish I could have more control over my own body!
I wish you the best of luck, so sorry you have had problems for so long. I have had all kinds of health problems since age 22. I am 48 now. Just keep looking for a doctor that will truely listen to you. Make sure you list what happened, your age, etc. on a list. Take that to the doctor and make sure you leave nothing out.
Depends on were you are located as to what the laws rules are .. I could have had a hyster at 16 if Id been willing to go though the phy eval that was manadatory for anyone under 21 to have who wonted a hyster without good medical reason (aka reason that they deen necessary).
Have you been tested for other medical conditions to which periods can trigger maga pain such as Prophyria (which is a condition which a memstral cycle be mega problematic - its not known as orphin condition for nothing).
I am sorry you have endometriosis and have not found a successful treatment option at this point. Endometriosis is a nasty condition by itself. Throw in PCOS and fibromyalgia and my goes out to you!
Many doctors do not want to push ladies into a hysterectomy for many reasons. One, it is not a risk free surgery. Two, it is not a cure all for all GYN issues -- for you specifically, it will not cure PCOS or endometriosis. Three, there are many alternative treatment options available these days, if you find a knowledgeable doctor, that may offer you the relief you are looking for without the need for an invasive surgery. And the list goes on!
I would strongly encourage you to look for a doctor who is knowledgeable regarding endometriosis and hopefully PCOS. If at all possible, try to find an endometriosis specialist. The key for pain relief for endo is not to have the uterus removed but to have the endo itself removed by a skilled surgeon. Excision surgery can be very successful. Removing the uterus also will not help with the PCOS and cysts so you want to consult with a knowledgeable doctor about how best to help with that condition.
It is possible a doctor will feel that having your ovaries removed could be beneficial as sometimes treating ladies with PCOS with HRT can help ladies find a hormonal balance that lessens the PCOS symptoms. However, that HRT regime might not be conducive for the endometriosis as estrogen can cause any endo that is not removed to grow and spread! On the other hand, a woman in her twenties is likely to need estrogen and possibly other hormones for her overall health! For instance, estrogen aids in the health of our heart, bones, skin, eyes, libidio, so on and so forth!
As you can see, there is no simple answer! And what works for one of us may not work for another. We each have to consider our overall health, weigh the pros and cons for our specific situation, and do what is best for us. It is important to find a doctor who will listen but it is also important for us to find a doctor we can listen to.
I know it can be rough and I wish I had a cure all, end all, one size fits all solution for endometriosis! And PCOS and fibro and ...! But I don't! Instead, I can suggest using the site to learn what other ladies have tried for their endo and/or PCOS. Be sure to pay attention to the cons as well as the pros! For instance, in my case I had surgical complications and more pain post hysterectomy than pre hysterectomy. I have also required surgery post hysterectomy for excision of endometriosis.
Take some time to check out our Resource Database to learn all you can about your specific conditions. You may also want to read and post over in the Endometriosis Support forum where there are many of us who have endometriosis.
Keep a journal of all of your symptoms and what helps and does not help with your symptoms.
Look for a doctor whom you can trust, even if s/he does not want to do a hysterectomy right off the bat. I would be very hesitant with a doctor who did not want to at least do a lap first, which you are expecting. But I would also want the surgeon who is doing the lap to be exceptionally knowledgeable about endo so that s/he could excise as much as possible during the surgery, regardless of what the plan would be for the future.
Last but not least, don't give up looking for help! Keep looking until you can find a medical team that will help you feel your best soon!
My heart goes out to you, dear sister. I believe I understand your frustration, as my story is similar to yours. I had my first period when I was 8 years old (I was totally unprepared and uninformed, and my first visits to a gyno were traumatic as a result). By the time I was about 11-12 years old, I was having very heavy bleeding during my periods and the pain was so bad I would miss school, often unable to walk. At that time, doctors were very dismissive about my condition. I was often told to "toughen up".
By the time I was 18, I knew that something was definitely wrong, despite the feedback I was getting from doctors. My periods had become irregular. Sometimes I would miss periods, but more often, I would have prolonged periods, lasting weeks and only ending after doctor intervention.
Without having good insurance, I was unable to pursue the matter with good doctors and so followed years of merely coping. I even lost a couple of jobs because the pain prevented me from working.
I am now 27 years old, married with no children. Even before things got as bad as they are now, my husband and I had talked about adopting children if we ever decide we would like to be parents (at this point, we have no plans to do so), because there are so many children who need homes anyway. I finally have good insurance (that we can barely afford), and found a doctor who did take my pain seriously. I had a laparoscopy in June. We had expected to find endometriosis, and we did find a small amount, but what we were surprised to discover was numerous thick varicose veins on my uterus and some small ones on my right ovary. When I woke up in the hospital, she told me about Pelvic Congestion Syndrome and that the common treatment is a hysterectomy. I took some time to process this information and heal from the surgery, and when I went back to my doctor, she pretty much pressured me into starting Depo Provera, without informing me properly about the drug. I did my own research, but nothing prepared me for the symptoms I have had to endure. In August, I had an ovarian cyst rupture and fought a subsequent infection. My doctor just seems frustrated with me, because, her specialty seems to be fertility and helping ladies have babies. To her, I think I'm just a huge disappointment. And though she told me that PCS is often treated with a hysterectomy, she pretty much refused to follow that line of discussion because of my age and the fact that I have no children. My pain at this point is totally debilitating. I can hardly work at all as sitting upright or standing for any length of time is very painful. I am not sleeping well, and I cannot be on narcotic pain medication forever. I need a solution.
I have an appointment tomorrow with a doctor who specializes in endometriosis and other forms of pelvic dysfunction. I'm hoping he will be a better fit for me, since this is the kind of thing he works with regularly, and his focus is not on the baby-making. We'll see. I'm nervous because I need my life back so desperately. Before all this got really bad (within the past 2-3 years), I was a very active young woman. I have not ridden a bike in almost 2 years now. I can hardly walk a lot of the time.
I guess what I'm saying is that I understand your frustration and I think that you are entitled to and even responsible for finding a doctor who understands your condition and who communicates with you in a way that works for you and is just a good 'fit'. This is our health, we're talking about. It's serious business. We only get one of these bodies and we deserve doctors who will listen and can be taken to task.
I wish you the best of luck and appreciate any info or support anyone can offer regarding PCS in particular because there is so little information available about this disorder.