Aa
Looking for answers: What's your story??
I was just wondering if anyone felt like contributing to my research here. I've read a lot of the newer ladies' problems but the women that have been on here for a while I'm not sure what brings them here.
I thought it would be cool if some of you would be willing to post a brief history of your "ovary" problems, if you were symptomatic, what the symptoms were, your possible diagnosis, and how things are going now. Oh, your age and if family history of ovc would be helpful too, if that's ok.
I'm being bothered by my "cysts" and can't seem to get a doctor to talk to me, so I'm doing all my own research. I'm only on my 2nd week of being scared out of my mind (still) about it all. Thought this might be a good way to pass the time and connect with others that are in the same boat.
TIA,
Julie
I thought it would be cool if some of you would be willing to post a brief history of your "ovary" problems, if you were symptomatic, what the symptoms were, your possible diagnosis, and how things are going now. Oh, your age and if family history of ovc would be helpful too, if that's ok.
I'm being bothered by my "cysts" and can't seem to get a doctor to talk to me, so I'm doing all my own research. I'm only on my 2nd week of being scared out of my mind (still) about it all. Thought this might be a good way to pass the time and connect with others that are in the same boat.
TIA,
Julie
Hi, I am a me too. I have Fibromyalgia, IBS, Tinnitus, Anaphylaxis,treated for Dysplasia on Cervix a couple years ago, treated for the Dermoid in Dec., started with stomach symptoms in 2001, i have a disease called Systemic Mastocytosis(complicated to explain)I have to say Fibro is real. Check your points, I cannot do a repetitive activity without cramping or tightening of all of my muscles. An attack for me will last weeks, giving up activities or overdoing myself has helped. ALso giving up really hot showers helps too. I also take a pain killer called Ultram or Tramadol (Generic). It has improved my life and it isn't a narcotic or anti-inflammatory. I know Fibro is becoming common but research it , it's real. I have been diagnosed by two Dr.'s and also have done things to improve my life. Bye, Crystal
You all have been through so much. Wow. It seems like a lot of you have had FM and IBS diagnoses, some of which fit and some of which don't. I'm been wondering how often those diagnoses got in the way of finding accurate answers, especially with the IBS when cysts were what was causing the gastric problems...
I got CFS post-virally in '97. I tried working for another 5 months because I loved my new job. Wound up having to leave for disablity. That was a huge change in life. I've found stuff that's helped since so I'm not bedbound, but still couldn't realistically work. I have some FM symptoms but it's really the blood pressure condition from the CFS that's the biggest problem. I was doing much better before this cyst so I was nervous as heck that the surgery would set me back (ask my doctors -- it's all I blubbered about through this whole thing). I've never had a gyno problem before this cyst, and was regular as can be, so I knew nothing. The last couple of years has been a bit less than exactingly regular so I'll see if it goes back to normal with the cyst out. I haven't had any kids. (However, but I have two great (little) nieces who think I'm a their playmate and that I should move in with them.) I can't imagine you woman going though all this with the cysts and cancer with kids to take care of too!
I've seen studies that woman with endometriomas have a higher percent of autoimmune conditions and related conditions. So, I've wondered if the CFS problems made me more susceptible to growing the endometrioma. Also, I gained 20 pounds after a back problem last year, and wondered if the extra estrogen from the added weight triggered the endo. to start changing (or maybe that's a silly idea?).
Lawyermom, my sister has FM following Lyme disease that wasn't pickup for a couple of years before being treated too...
I got CFS post-virally in '97. I tried working for another 5 months because I loved my new job. Wound up having to leave for disablity. That was a huge change in life. I've found stuff that's helped since so I'm not bedbound, but still couldn't realistically work. I have some FM symptoms but it's really the blood pressure condition from the CFS that's the biggest problem. I was doing much better before this cyst so I was nervous as heck that the surgery would set me back (ask my doctors -- it's all I blubbered about through this whole thing). I've never had a gyno problem before this cyst, and was regular as can be, so I knew nothing. The last couple of years has been a bit less than exactingly regular so I'll see if it goes back to normal with the cyst out. I haven't had any kids. (However, but I have two great (little) nieces who think I'm a their playmate and that I should move in with them.) I can't imagine you woman going though all this with the cysts and cancer with kids to take care of too!
I've seen studies that woman with endometriomas have a higher percent of autoimmune conditions and related conditions. So, I've wondered if the CFS problems made me more susceptible to growing the endometrioma. Also, I gained 20 pounds after a back problem last year, and wondered if the extra estrogen from the added weight triggered the endo. to start changing (or maybe that's a silly idea?).
Lawyermom, my sister has FM following Lyme disease that wasn't pickup for a couple of years before being treated too...
Geez, it is all coming back to me. Forgot to mention the acid reflux that I was also dxd with during the last two years prior to surgery. Was put on previcid. Seems to have gone away within the last 2-3 weeks (I am 9 weeks post op) Haven't taken a previcid either!!! If I remember more, I will let you know.
~Tascha
~Tascha
Sorry, forgot to mention, yes most of the symptoms are gone. Right now I am have menopausal symptoms (some of which I had prior to surgery due to the disruption of the ovaries).
~Tascha
~Tascha
Gatsby, my history sounds similar to yours.
I've had chronic back problems since a serious auto accident in 1996. Months of physical therapy and more on and off since. But I was basically healthy. Four children, no problems during pregnancy or child birth, tubal ligation in 1991. In December 2000/January 2001, I began having serious problems with bloating, serious water retention, high blood pressure, erratic and very heavy periods. In fact, on March 10, 2001 (remember because it was my daughter Katy's birthday and we'd just picked up her birthday cake), I had to be taken to the hospital in an ambulance. My son had called 911 because we all thought I was having a heart attack. BP 256/163. Patted on the head at the ER and sent home with diuretics and told to have a cardiac workup. I did, everything was fine and things went back to normal. A month later, I was in the hospital again with what they said was a kidney infection, but nothing was ever found in my urine. Just a very high white cell count - 19000. Good to go after that, but still having really heavy periods with bad clotting and the time in between got shorter and shorter. Tried BCP, but they made me feel worse, so decided I'd just deal with it. By January of 2004, I was bleeding more days than not, had really significant lower left pain, back, groin and leg pain and looked like I was about 7 months pregnant. Had the hot water ablation in July 2004, started bleeding again in September 2004 and since then, it's been the same progression as before. Things were okay, then the periods come closer and closer together, more heavy bleeding, clots and pain and pregnant belly.
In the middle of all of this, in June of 2005, I had a severe case of diverticulitis with an actual perforration of my bowel, three months on antibiotics, surgery in September of 2005 to remove the diseased part of my colon. Needless to say, my focus was on that, but on the back burner was these female problems. Went for a follow up in late November last year, CA-125 elevated, had the ultrasounds and a simple cyst about the size of a penny and a complex mass with debris about the size of a dime were found. Doc says hemorraghic or endo cysts. Follow up US in January showed that these things were getting smaller, a little, but still there. I'm to have an US again next month. Gyno tomorrow because the bleeding has gotten ridiculous and we'll see where we go from there.
I've had a long road. Like another lady here, so much that's been going on has been manifesting itself as autoimmune disorders and I've been tested for everything, even treated, even though I'm seronegative for things like RA, lupus, MS, etc. But I've gone through the testing for all of that. I'm certain there is a connection between all of these things. I think it may be these plastic/metal clips that were used in my tubal ligation in 1991. If not, then some kind of agent, bacteria or bug that has not yet been identified is doing this to me, and to many others as well. We're put into the "fibromyalgia" category and given drugs to control symptoms. I don't do the drug thing anymore other than vitamin supplements and occassonally, when the pain gets too bad, I use Ultram for pain.
I know this is long, but this is the nutshell version. Love, hugs and God bless, Barb
I've had chronic back problems since a serious auto accident in 1996. Months of physical therapy and more on and off since. But I was basically healthy. Four children, no problems during pregnancy or child birth, tubal ligation in 1991. In December 2000/January 2001, I began having serious problems with bloating, serious water retention, high blood pressure, erratic and very heavy periods. In fact, on March 10, 2001 (remember because it was my daughter Katy's birthday and we'd just picked up her birthday cake), I had to be taken to the hospital in an ambulance. My son had called 911 because we all thought I was having a heart attack. BP 256/163. Patted on the head at the ER and sent home with diuretics and told to have a cardiac workup. I did, everything was fine and things went back to normal. A month later, I was in the hospital again with what they said was a kidney infection, but nothing was ever found in my urine. Just a very high white cell count - 19000. Good to go after that, but still having really heavy periods with bad clotting and the time in between got shorter and shorter. Tried BCP, but they made me feel worse, so decided I'd just deal with it. By January of 2004, I was bleeding more days than not, had really significant lower left pain, back, groin and leg pain and looked like I was about 7 months pregnant. Had the hot water ablation in July 2004, started bleeding again in September 2004 and since then, it's been the same progression as before. Things were okay, then the periods come closer and closer together, more heavy bleeding, clots and pain and pregnant belly.
In the middle of all of this, in June of 2005, I had a severe case of diverticulitis with an actual perforration of my bowel, three months on antibiotics, surgery in September of 2005 to remove the diseased part of my colon. Needless to say, my focus was on that, but on the back burner was these female problems. Went for a follow up in late November last year, CA-125 elevated, had the ultrasounds and a simple cyst about the size of a penny and a complex mass with debris about the size of a dime were found. Doc says hemorraghic or endo cysts. Follow up US in January showed that these things were getting smaller, a little, but still there. I'm to have an US again next month. Gyno tomorrow because the bleeding has gotten ridiculous and we'll see where we go from there.
I've had a long road. Like another lady here, so much that's been going on has been manifesting itself as autoimmune disorders and I've been tested for everything, even treated, even though I'm seronegative for things like RA, lupus, MS, etc. But I've gone through the testing for all of that. I'm certain there is a connection between all of these things. I think it may be these plastic/metal clips that were used in my tubal ligation in 1991. If not, then some kind of agent, bacteria or bug that has not yet been identified is doing this to me, and to many others as well. We're put into the "fibromyalgia" category and given drugs to control symptoms. I don't do the drug thing anymore other than vitamin supplements and occassonally, when the pain gets too bad, I use Ultram for pain.
I know this is long, but this is the nutshell version. Love, hugs and God bless, Barb
Well, that's the first time I've seen fibromyalgia here and it really made me perk up and pay attention. After 13 months of going from heart attack to sinus infection, I was diagnosed with fibromyalgia in 1994. I was diaabled with it for 8 weeks while we got it under control with anti-depressants (Pamolar). Took the Pamolar for a couple of years, went through menopause at which time, nothing helped me to sleep and I really suffered through pain, hot flashes,night sweats and sleep deprivation for a couple of years. Around 1999, I started feeling alot better and felt well for a couple of years until I also started having stomach issues 2 - 3 years ago. Finally went to a gastro about 1 1/2 years ago (same guy who found my cancer 1/06) who did an endoscopy to determine I had the H Pylori virus (which causes ulcers) treated me for that as well as Nexium for acid reflux. November 2005 I was still having stomach problems and he did a colonoscopy which was clean. Fast forward to my cancer story beginning 1/27/06 which is told in another thread here.
My but we are all tied together aren't we? It's so strange.
Julie
My but we are all tied together aren't we? It's so strange.
Julie
Hi! I was diagnosed with fibormyalgia when I was 22, after suffering from lyme disease 2 times and erhiculosis. My doc told me that the fibormyalgia most likely was caused by having lyme disease for over a year undiagnosed and untreated. I have had three children in 4 years. Each time I carried to much amniotic fluid to the point of going into premature labor. One time, I had so much that when my water broke my placenta abrupted and I almost had to have a blood transfusion. It was between the birth of my second and third child that my doc discovered fybroids. I went on BC for a little while, but I had too much spotting, and decided to just stick to a good diet and exercise. My third pregnancy was a nightmare and I eventually had a c-section and tubal ligation. I was having a LOT of problems with my cycles, but I blamed it on everything. Nursing, tubal ligation, etc. Finally, after living with a lot of annoying and sometimes painful symptoms, I went to see my obgyn (about a month and half ago). That is I found out I have numerous follicular cysts on both ovaries, and my right ovary is enlarged. Also, my single fibroid has turned into two. I am waiting for my next cycele when I will beging BC to try and get rid of the cysts. And that is all.
Okay, so let's add a question here. Who else has been told they have fibro? I can tell you, once you get that label, it's hard to get rid of. One thing I have learned though, because of that label and being put into a chronic pain program, is that you can have chronic pain and there never is a cause found. I think of my fibro, if it exists, as being an effect rather than a cause, brought on by years of constant pain from the auto accident in 1996, that got me stuck with the chronic pain label and ultimately fibromyalgia diagnosis. I've become so accustomed to having some kind of pain each day that the pain from my diverticulitis was pretty much blown off, by me as much as by the doctors I'm sorry to say, as being just IBS or part of the fibro.
When I started having pain again after my bowel surgery four months later, I paid attention to it rather than cover it up with pain meds and deep breathing and relaxation exercises. The cysts were found, and I have my suspicion that they've been around on and off for a long time. I've just had so many layers to sort through. It can get confusing.
Then there's that lyme connection - I moved to Washington from Kansas. In Kansas, I pulled ticks off of myself, kids and dogs bazillions of times, but that's another one that I tested negative for and sent us on a goose chase because of all the controversey that surrounds THAT. . . I'm real tired of constantly being told I have these controversial things. Postive for the EB, cytomeglavirus and herpes zoster as well. H. Pylori ruled out.
There is a connection, I know it, and I'm hoping it is found while I still have some years ahead of me. And so that those coming up behind me in genreations don't have to be made to feel like I have been made to feel this last couple of years. I hesitate to even MENTION the "f" word, fibromyalgia, because of the controversey surrounding it. When they found the hole in my bowel back last June, the first thing I thought, and ultimately said to my primary care physician was "see, I told you I was really sick." Now, I'm really hoping my gyno is right, that my cysts are nothing but functional or hemorraghic and much will be solved by living through menopause. I'm tired of fighting, tired of hurting and tired of bleeding. And I really do not want anymore holes poked in my belly. Standing joke, albeit not very funny to me most of the time, around here is that I should have had a zipper or velcro installed.
I'm just tired, and very long winded these days, sorry. Problem is, I type 124 words a minute. . . so I can keep up with my thoughts and sometimes I've got waaaaay to many of them, like right now.
Good news is, I haven't bled in three days now. :) Love, hugs and God bless, Barb
When I started having pain again after my bowel surgery four months later, I paid attention to it rather than cover it up with pain meds and deep breathing and relaxation exercises. The cysts were found, and I have my suspicion that they've been around on and off for a long time. I've just had so many layers to sort through. It can get confusing.
Then there's that lyme connection - I moved to Washington from Kansas. In Kansas, I pulled ticks off of myself, kids and dogs bazillions of times, but that's another one that I tested negative for and sent us on a goose chase because of all the controversey that surrounds THAT. . . I'm real tired of constantly being told I have these controversial things. Postive for the EB, cytomeglavirus and herpes zoster as well. H. Pylori ruled out.
There is a connection, I know it, and I'm hoping it is found while I still have some years ahead of me. And so that those coming up behind me in genreations don't have to be made to feel like I have been made to feel this last couple of years. I hesitate to even MENTION the "f" word, fibromyalgia, because of the controversey surrounding it. When they found the hole in my bowel back last June, the first thing I thought, and ultimately said to my primary care physician was "see, I told you I was really sick." Now, I'm really hoping my gyno is right, that my cysts are nothing but functional or hemorraghic and much will be solved by living through menopause. I'm tired of fighting, tired of hurting and tired of bleeding. And I really do not want anymore holes poked in my belly. Standing joke, albeit not very funny to me most of the time, around here is that I should have had a zipper or velcro installed.
I'm just tired, and very long winded these days, sorry. Problem is, I type 124 words a minute. . . so I can keep up with my thoughts and sometimes I've got waaaaay to many of them, like right now.
Good news is, I haven't bled in three days now. :) Love, hugs and God bless, Barb
You know, the "f" word bother be too. Even my husband looks at me some time like he does not believe I am in pain. I have shooting arthritis pains in my fingers and forearms, knees and ankles. Not all the time and nothing particular seems to trigger it. I really have been half-convinced that I am a hypochondriac...which is why I RARELY go to the doctor and why it took me almost two years to see my obgyn.
When i was pregnant with my daughter they told me that i had a simple cyst on my left ovary and said that it was ok.I had my daughter in 2001 and had my tubes tide nothing was said about the cyst.Then four months later it was like i was hemorraging every time i would have my period,i was huge,like i was still six months pregnant,could not lay on my stomach,no sex or anything so i go back to the doctor and i had to have my uterus and cervix took out..When i go back to have the staples took out they told me that they left my ovaries but i did have a cyst on the left ovary again.But not to be to worried ,that it was probably just from a harmonal change and that it should go away..Well by the time that my daughter was two i would double over in pain with stomach spasms,had lower back pain,pain during intercourse.So i went to the gyn ,they did a pelvic exam on me ,said they felt nothing and sent me home and said that my pap was fine..I was sent to another doc that sent me for a mri on my back and was diagnosed with disk deteriation disease.Then in about march or april of 2005 I doubled over in pain with spasms in my lower stomach ,pains shooting into my bottom ,pressure on my bottom and rectum,had a ct done and found a cyst on both ovaries,is what the report wrote..Then the hurricane hit and evacuated ,come back so swelled up i could have passed for the good year blemp.It just got worse ,went for another ct ,the cyst were still there and they said that they were solid and cystic.Finally get with a regular gyn he does the schedualing of my surgery in october but tells me that it wont be done till january..By this time i look like i am nine months pregnant,could not hold down food because of nausia,high blood pressure ,swelled leggs,pain in the groin area and down my legs ,pains to my rectum,to my bottom,heart burn ,indegestion,weight gain,weight loss,urinating more than what a horse should,pimples,horrible pain during intercourse,shortness of breath ,you name ,i had it..They did my surgery on january the 13th,I had a 8.8 endometrioma on the left ovary and a paratubal cyst on the right tube and adhesions everywhere...from previous surgeries.They removed everything..Hope this helps.Oh and i am 33 ,it started when i was 28 that i know of,and my grand mother and my aunt died of ovarian cancer..I am five weeks post op...
The dermoids are removed, they were benign, no other masses at this time. They can't tell until they remove and biopsy. The polyp also benign. So yes I am ovca free. I do have a mammo next week. Hopefully same results. Let me know if you need more info!
~Tascha
~Tascha
And i forgot to add that i was also diagnosed with IRRATABLE BOWEL SYNDRONE, TO ,BECAUSE I HAD DIAHREAH FOR A WEEK THEN CONSTIPATION,THEN DIAHREAH AND THEN CONSTIPATION....
So why did they remove your uterus and cervix first? It sounds like you were miserable for a long time. :( Anyone have advice on what can be done to keep out of that kind of prolonged misery? Should the cysts be removed right away once they are found to avoid this?
Also fancy1972, are you at this point to be ovca free?
J.
Also fancy1972, are you at this point to be ovca free?
J.
oH YEA I FORGOT TO ADD THAT ,AFTER BEING THAT MISERABLE FOR THAT LONG,AND THINKING THAT I HAD OVCA,IT ALL TURNED OUT TO BE BENIGN..THANK GOD..AND I HAD TO HAVE MY UTERUS AND CERVIX REMOVED BECAUSE AFTER MY DAUGHTER WAS BORN ,MY UTERUS NEVER CONTRACTED BACK DOWN TO NORMAL SIZE..IT WAS CAUSING ME TO HEMORAGE EVERY MONTH,I WAS LOSING TO MUCH BLOOD...I WOULD GET REAL SICK EVERYTIME THAT I HAD MY MONTHLY.VOMITING AND BAD HEADACHES AND ALL I COULD DO IS LAY IN THE BED..WITH THIS LAST SURGERY THEY DECIDE TO TAKE EVERYTHING BEFORE THE SURGERY WAS DONE BECAUSE I HAD BEEN DEALING WITH IT FOR SO LONG AND BECAUSE OF THE HISTORY OF OVCA IN MY FAMILY..AND BECAUSE OF THEM BEING COMPLEX FOR SO LONG AND THEY WERE SLOW GROWING AND I THINK THAT IT NOT ONLY GAVE ME A SCARE BUT THEM TO...
This is very interesting. Sounds like alot of us have been doing the diagnosis rumba for years! My story is so similar to all of yours...so many symptoms, so many tests and so few answers. I want to hear from someone who has had surgery and GOT BETER!!! We need some light at the end of the tunnel here, girls! Anybody????Someone???? Cindi
Well, I can tell you that I am feeling better since my surgery. My acid reflux is gone, the pain in the groin is gone. I still have a slight back ache, but that happens when I do too much and I am not fully healed inside. The ovarian dermoids that were removed were each larger than my uterus. So I had alot of tissue trauma that will take time to heal. When these twinges hit, I know I've done too much. I hope this helps you!
~Tascha
~Tascha
I need to save this page so that I can re-read it if I ever start to feel sorry for myself.
Well, I'm not sure how to answer your ovca question. Yes, the path on my cyst came back 'borderline, stage 1a' which IS cancer but at the very lowest stage and oncologist has told me I will have no treatment, soooo, yes and no :-)
I do, however, have IBS. Big surprise, huh?
The other Julie
I do, however, have IBS. Big surprise, huh?
The other Julie
Thanks for contributing.
So are all your masses gone now, as well as your symptoms?
And are they now certain you are ovca free?
How do they tell what kind of mass it is, dermoid or otherwise? Surgery alone?
Thanks again,
J.
So are all your masses gone now, as well as your symptoms?
And are they now certain you are ovca free?
How do they tell what kind of mass it is, dermoid or otherwise? Surgery alone?
Thanks again,
J.
Well, since you asked! I had gr 3 cervical dysplasia in my early 20's. I am 45 now and went to my annual gyn appt 11/3/05. I told my dr that my periods were very heavy and very irregular. I had gone off bc 2 yrs prior due to a clotting scare (turns out I had a severe panic attack brought on by hormones!) No longer on bc, take lorazapam when needed for GAD). My other symptoms were chronic lower back pain, which I just attributed to stress, pain in my groin area and sometimes during sex. I had a 10 pound weight gain, although I was walking 2 miles per day and eating healthy. (snickers bars on occasion). Anyway dr. sent me for a us and transva us on 11/15/05. Discovered mass on right ovary and thickening of the uteran wall. Dr. scheduled lap for 12/21/05. During surgery it was discovered that I had a softball sized dermoid on my right ovary and also one on my left ovary. The right ovary and tube was removed, due to the shape of the left dermoid(larger than my uterus!), he was able to save 10% of the left ovary. I also had a benign polyp in my uterus. I also have benign breast lumps. Have mammo scheduled for 3/2/06. I hope that this info helps.
~Tascha
~Tascha
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