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Endometriosis, adenomyosis, ovarian cysts

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Posted 9/8/2011 9:32 PM (GMT 0)
I am 23 with a history of endometriosis, large ovarian cysts, uterine polyps, and suspected adenomyosis. To complicate things my kidneys are located behind my left ovary and when I have large cysts it presses on my kidneys and causes them to not function well. I have had multiple surgeries. I have been to an endometriosis specialist and have had excision surgery. I have tried many different types of birth control, but nothing has worked. I was in the ER this last month for a large cyst that ruptured on my left ovary and caused my kidneys to hemorrhage. I am in so much pain all the time I can barely function. I just graduated from college, don’t have a job or insurance. At this point a hysterectomy is the only thing that I believe I can do. I went to the doctor today and he would not listen to anything I said, he just said I should try a different birth control and wait till I am 35 to have a hysterectomy. Not only am I in pain all of the time, but I am afraid I am going to have permanent damage of my kidneys. I need to find a doctor that will listen, if anyone can help on how to find a good doctor, it would be much appreciated, thank you.
Posted 9/8/2011 10:25 PM (GMT 0)
sae7706, Welcome to HealingWell. I am sorry for the pain that brings you here, but glad that you found your way to the site. It has helped in so many ways.

I suffer from endometriosis, adhesions, ovarian remnant syndrome, depression, and had adenomyosis before my hysterectomy. I wish that I could tell you that there is a treatment that would cure what the illnesses we share, but I can't. Everyone's body is different, and some treatments work for others that do not work for me. I can tell you that the same is true for hysterectomy. I heard from 5 different gyns that I had to have a hysterectomy to "cure" my pelvic pain. I waited for years until the pain became so unbearable I had no choice. I had 2 sons at 18 and 19, so my child bearing days were over. The hysterectomy 2 years ago did not cure me, in fact, it made the adhesions and pain worse than before. There are many women who have success with hysterectomies.

I kept looking for a doctor who would listen to me and was willing to work with me on treatment plans, not just one to tell me what to do all the time. Have you researched other treatment options like accupuncture, hormone therapies, myofascial massage? Are you working with a pain management doctor or just your GYN? Do your gyn and nephrologist (kidney specialist) communicate well or at all? Are there teaching facilities in your area? Teaching hospitals can be a wonderful resource to find alternative or new treatments for all types of conditions.

I am very sorry for what you are going through. I do understand the pain with sitting, standing, walking, cysts rupturing and reforming, moving too far and the adhesions pulling on things. I wouldn't wish this on my worst enemy. At this point, I have had so many surgeries and treatments I am ready to tell the doctors to leave me alone and suffer with just pain management medications. Now I am stuck with a right ovary that has regrown adhered to my bowel and bladder 3 times. Soon I will need another surgery to remove it, because it too is cystic and they rupture, pulling the adhesions out of whack and causing me to feel like a Mack truck hit me for a few days at least.

As for the insurance, I am not sure where you live, but there are options for medical assistance in the United States. You may want to check with your local county courthouse or assistance office. I know our state (PA) has a very good website that allows you to apply online, sometimes not even requiring a face to face appointment for approval of benefits. I know what you are going through is rough, but you have found a very supportive family here who listens and helps as best as they are able. There are many times that the members here have been a lifeline for me. Good luck to you, and I hope to read more from you soon.

Mindy
Posted 9/8/2011 11:40 PM (GMT 0)
Hello Sae

Nice to meet you, and welcome to our group here. I am so sorry for all your pain but certainly glad that you found us.

I don't suffer from the same illness as yourself but do have chronic pain iin the form of constant severe headaches.

So i certainly can understand that part of it. I sure hope you are able to find a doctor that can help you. Mindy has

a lot of experience in your field of pain and has given you some great ideas.

What did you graduate from in college? Where do you live? I am in ontario. I am a registered nurse but on disability

now due to my chronic headaches. I sure miss my job working with children.

I look forward to chatting with you again. Please post as often as you can. There are so many wonderful people

here on this forum and you can also check out the chat room as many of us go there too.

Take Care

Suzane

 

Posted 9/9/2011 2:54 AM (GMT 0)
I have endo and adhesions. Mindy's just given you the advice I would give you. A hysterectomy helps many women but it doesn't help everyone. If you have a hysterectomy at your age, you will need to take hormones for years. These hormones can cause the endo to flare up. When women have pain after a hyst, they find it's harder to get any treatment. Docs tell them that they can't have endo since they've had a hysterectomy but that is not true.

I suggest you check out the website for the Center for Endometriosis Care in Georgia. The docs there will review your records for free and let you know what treatment they advise. They are experts and have helped many women. This is what they do and they are good at it. They get many complicated cases and have experts in other medical specialties that they can consult. Even if you can't afford to go there now, it might be worth getting a second opinion from them. They will call you so you don't even have to go to Georgia (unless you live there!)

I am sorry that you have to suffer like this.
Posted 9/9/2011 12:40 PM (GMT 0)
Im so sorry to hear your dealing with all this. We have similar stories, minus the kidney issues for me.

All my life I suffered from crazy periods that would render me unfuctional, pain, throwing up, ect. By my 20's I started developing ov. cysts. Mine were hemmoragic cysts, so it was important to remove them when they developed, rather than take the wait and see approach. This is also when my endo started. I was put on Depo Prevera, as my ob/gyn felt that might be the best thing to help preserve my organs so I could have children. I do feel like this is what allowed me to have kids since it all together stopped my menstral cycle.

During our trying to concieve years, I spent 3 yrs trying to get pregnant. Once we finally held onto a pregnancy, it was a rough ride. My gyn figured it had to do w/ the damage already done to my organs. Both my children were born premature, but mostly healthy (due to a GREAT team of doctors). Both deliveries were csections and my doc would clean out the endo both times, in addition to the other cyst surgeries inbetween pregnancies.

With a total of 8 abdominal surgeries (almost all full cuts thru my csection scar), i ended up losing most of one ovary inbetween pregnancies.

After having my second child and being done risking fate, we decided we were done. I started having severe pain again after my second child and went back to my gyn. I had 6 cysts on my working ovary and oddly, a few on my non working ovary. My gyn said it was time for a hysterectomy.

Three yrs ago i had my hyster. I was 36yrs old. Pathology showed stage 4 endo along w/ all the cysts, and adenomyosis thru my  entire uterus, and endo growing outside my uterus, attaching my stomach to my bowels and other organs.

I ended up having 3 other surgeries after my hyster due to trapped nerve from hyster closure, and then two hernias after surgery. It  has been a MESS. Hormone therapy has been horrible. I have developed severe, chronic migraines as a result. I am now working with 2 neurologists and and endocronologist to try to fix this mess.

On a side not, I will not say i regret having the hyster. BUT, i do feel like I have just traded on problem for another.

Where do you live? My gyn's were fantastic, so if you live in the states, Im in Miami, fl. i can give you their info.  I wish i had some advice for you, but these types of decisions should not be taken lightly. Please do not rush into a hysterectomy. Find a new doctor and keep looking until you find one who is willing to listen and help.   Good luck

Posted 10/2/2011 4:20 AM (GMT 0)
Hi. I am due to have laparoscopy as my last resort to try to find the source of my back pain. I have had multiple MRIs and a bone scan. All resulting in no abnormalities. Here recently I had two half dollar size ovarian cysts on my left ovary and started nuva ring and they havent come back since. I think they were back right before I started nuva ring. I was on antibiotics a couple of months later and a large bloody mass came out after extreme cramping. Coincidencly they found a kidney stone in my left kidney. There is something majorly wrong with my left side an I have been dealing with extreme back pain on my left side for four years now and my last hope is that maybe it is endometriosis causing my back pain. I can't take it anymore. I have spent over $20,000 on tests, facet and lower lumbar pain blocks, ect and no one can figure it out. I am getting tossed around by doctors who don't give a flip and pain management drs want to burn off my facet joints. I m at a loss and if anyone has any ideas or similar experiences I could really use some advice. I am trapped in a constant nightmare if pain and it seems like one day lasts a week and no one has compassion for people living with chronic pain.
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