I can't believe I finally found a place to get some help.
I have just been dx with a complex cyst and have surgery scheduled. Background.....I have an undiagnosed disease of a rhumatic or autoimmune nature. They have been trying to fit the pieces together for 4 years and they thought RA or Lupus but nothing shows up on blood tests and they say I need to go to a bigger hospital where they see the rarer things of this nature.
Now... because of a big chemical company down the road and a dispute about the chemical they have been leaking, we all had to have extensive blood work for a scientific study. Mine came back with a high CA125 so off to the gyno I went. They found a complex mass with increased blood flow on that side and not such great doppler flow image results. My gyno strongly recommends removal NOW. As I am past childbearing but not into menopause I have no problem with this.
I WAS having female type problems, now as I research they all match. BUT with my chronic condition I assumed all my problems were related to that mystery disease and didn't even consider female diseases.
I had also been having heavy periods so he wants to do a balloon ablation and tie my tubes at the same time he gets that ovary. Did anyone have heavy bleeding that went away after just ovary removal? Has anyone had the ablasion, too?
I am so glad to have someone to ask. You all seem to care so much for each other. How do I see info about you when you post? Is there a members list? I click on your names and nothing happens.
I am glad you found us; hopefully those with similar symptoms to yours will respond shortly.
These stupid chemical companies are amoral; they worship the almighty dollar, and power....but those at the top; controlling the power; don't give a damn about the real people either. I haven't walked in your shoes, so, I am unable to advise you. You are in a tough spot at this time in your life.
I am very pleased to hear you are removing that complex mass immediately...don't waste any time on that....are you dealing with a surgeon who specializes in gyn/oncology? If not , please consider locating one for your surgery. It is good you are trying to stay on top of your medical situation.
We communicate with eachother mostly by reading and responding to what others are saying. Some of the ladies here exchange e-mail addresses.....that is a personal choice.
This is an empowering site.....it keeps us from being alone...it helps us put everything we feel on the line for others to respond to....it educates us...it gives us a place to go where we can feel safe, and surrounded by love from others who know what we are feeling.
This is a place of unconditional acceptance.
Welcome, CindiSue to our haven. Peace. dian
I too have been dealing with mystery after mystery for over two years now. Same things you talk about. I was so showing the symptoms of RA at first that the rheumy treated me with Plaquinil for two months, no change, so I decided I didn't need to continue poisoning myself. The only thing I've had come up with a concrete diagnosis is diverticulitis, which I had surgery for, and now this ovarian cyst thing popped up. I've also been told it could be lupus, RA, MS, etc., etc., etc., but no tests bear anything out. I saw specialists out the wazoo in Seattle too. If you ever get a definitive diagnosis for your mystery disease, please let me know!!!
Part of this last couple of years also included some female problems, mostly dysfunctional bleeding. I had a hot water ablation done in July of 2004 and it straightened me out for just a very short time. Then I got so sick with the diverticulitis that all the female stuff took a second seat and had to wait. A few others here have had the ablation procedure as well, and it didn't really solve their problems either, only made it better for a little while. I think though, that if I was given the choice again to try the ablation first or have a hysterectomy, I'd try the ablation first. If they wanted to try and do the laser ablation on my now, I'd probably go for it, but I've pretty much been told that my only option is to have the hysterectomy. I'll be seeing the gyno on Thursday and will know more than.
Cindi, I completely understand and KNOW how frustrated you must be. I can only hope that you have not been put through the ringer as I have with being told you had fibro, or you must have been traumatized sometime in your life, or, in otherwords, this could be all in your head. I was told I just had IBS and fibro when I actually had diverticulitis and my bowel had perforrated. At least because of that experience I'm getting quicker action on this cyst stuff. Take care, stick around, love, hugs and God bless, Barb
You're not long winded. By sharing maybe we'll put together some puzzle pieces for some of us.
DuPont was right down the highway from us when we lived in Kansas, right between Topeka and Lawrence. I cannot remember the name of the outfit that took over that plant, but they manufactured plastics as well. You could always tell when the wind was coming out of the East where we lived. . .
This is really very interesting to me. Plus Cindi, if you don't mind my asking again, do you happen to have clips in you used for tubal ligation?
Thanks, and don't worry about talking too much, I'll probably give you a run for your money there. I can type faster than I can talk I think. . . Barb
Wow, you have been put through it, haven't you?! Without giving too many personal details, I so have a degree and was expected to make a meteoric rise through corporate ranks. For the reasons you and the others have just expressed, I decided to remove myself from the corporate world. Yes, it has "cost" me money that I will never earn, but I can live without that particular type of guilt.
Anyway, many chemicals, as well as plastics, produce what are called xenohormones. (I think I have that is spelled correctly.) Essentially, these chemicals and plastics give off residues that the body interprets or uses as hormones. One of the common effects from some of the chemicals is from estrogen-like substances. Wowm with such exposure develop symptoms of having too much estrogen, and I have read of men becoming impotent or experiencing other problems from this contamination. Thus, a woman living near a chemical dump might have endometriosis from having too much estrogen, but then recover completely from that 'endometriosis' by simply moving away from that source of residue.
So, it may very well be that you are exposed to chemicals that are giving you the symptoms of diseases that you might not have. Your complex mass does not read much different from the endometrioma that I had removed in 2004. And endometriomas are more common in women with endometriosis. Unfortunately, the "system" being what it is, the probability that you could ever prove a link, if one even exists, is pretty much non-existent.
What else can you tell us about the study being done, the study that lead to the discovery of your ovarian mass?
My husband, who is a scientist, is convinced that many of my problems, if not all, are due to those danged Hulka clips that were used to do my tubal ligation. I'd searched and searched for what materials are used to manufacture those clips and until recently, didn't find anything. Last week I did.
Cindi? Do you have these clips?
Anyway, they are made from Lexan, a plastic similar to Plexiglass, and gold plated titanium. I'm real allergic to metals, except gold, and was told that these clips would be just fine for me since they were made from gold, an inert material. Well there not just made from gold, I've learned. I know from trying to wear gold plate jewelry that I metabolize it off and then the metal underneath gives me a heck of a rash. Even things like surgical steel and hypoallergenic post earrings make my ears become infected. I break out around my wrist from wearing a metal backed watch and if I don't break out from the watch right away, I end up killing it and wearing most of the metal off the back. My husband has a theory that I'm also allergic to the Lexan as well, since it does something that he refers to as "outgassing" for years. He's bringing home some from his lab and we'll tape it to the inside of my arm and see what happens. Some titanium too. He's also theorizing that my body as gotten rid of the gold and the titanium is making my insides do the same thing that happens to my earlobes when I wear cheap earrings. I'm not sure what we'll find, but I trust his instincts. He really knows his stuff. He has said from the beginning that I seem to have been poisoned as so many of my symptoms are like metal poisoning and from the experience he gained with some of the government agencies he's worked for in the past, I really think he may be on to something.
We plan to present a united front to the gynocologist on this, and doing further research as to whether others have had this problem from these clips. I found one article so far on someone having a gold allergy and developing abscesses from the clips, and some other items that you cannot get a look at. From working for an attorney for years, that tells me there's probably litigation going on. I don't care about that really, I just want to get well and get these things taken out of me.
Thanks for listening to me here, and again Cindi, welcome. Love, hugs and God bless, Barb
Thank you so much for the welcome and the info. It is sad how on tv they can fix us in an hour but in real life you wait for this appointment, then wait for a test, then wait for results...
My timeline is different than most on here as I found out on 1/29, Sat. that my CA125 was up. I had it repeated that next Tues. at my GP's lab. I saw the NP at the gyno that Fri. She ordered the 1st US for the next Wed and immediately told me the results. She thought we could wait a few cycles and repeat the US. I was worried but okay, we wait. BUT I got a call from their office that the Doc reviewing the US did not want to wait, he wanted it repeated in 2 weeks. That was the next week and it had not changed so in the space of 3 weeks I was diagnosed and have surgery scheduled for 3/17 right before the kids spring break. I feel very fortunate in that my doc is very good.. plus very honest and understanding. He can't tell exactly what kind it is but it is NOT staying in me!
I am on 325mg asprin therepy to prevent strokes. I had what they think was a TIA on 1/3 and I assumed the heavy bleeding the last few months was due to the asprin. I think I am going to see how the last cycle I'll have before surgery is before I go through with the albation. I have not had a major problem with bleeding. My second day is always very heavy but I'm 5 days and regular so I don't know if it is worth messing with.
As for the chemical issue...it is DuPont...one of the only makers of that lovely tephlon on our nonstick skillets. There has been an issue with it for years here. We tranfered to the area in 1998 and I got sick in 2001. It is in the water of several nearby communities. We pay $60 a month for 5 gal bottled water. We can't even cook with it. There was a lawsut and part of the settlement waas for DuPont to fund this major study on haw this C8 chemical effects humans. Not quite Erin Brockovich but...It is scary.
I wish my other health issues were so seamingly easily solved. I have had like 5 MRI's and hundreds of blood tests.
I PROMISE not to be so long winded in the future....but you bottle so much up... Don't want to worry your family,etc so it kind of all explodes when you find an outlet. I also hope to be of help to some of you. But thanks for the welcome!!
PS I am 47, married to high school sweetie for 26+ years, have 5 kids, 26, 25, 17, 13, 11 (3 still at home) and 4 grandkids...6,4,3,1 1/2. 2 of which I watch part time. So I've been plenty fertile enough for one lifetime...they can have the ovaries!!
Boy, this thread is really scary. There is an Eastman Chemical Plant in my town here too. They make polyethelene, the plastic used for making soda bottles. I worked out there for a subcontractor adding onto the plant about 25 years ago. Now I have a 5.5 cm complex cyst and a CA125 of 457. Erin Brochavich, where are you????
This is interesting, I also work for a chemical company. When I was in the US I worked in a building shared with the research labs (for 7 years). My husband still works in a lab about 30% of the time.
I am now in an office where there are no chemicals but 7 years is a long time.
I wonder if there is a conection?
I always drink bottled or filtered water (my husband insists)so I wonder if the chemicals can get into your body in the air. I know we certainly could smell them throughout the building.. Nevermind all the toxins in our food supply. In Europe they have a lot more regulations about chemicals in foods (fertilizers, meats, milk, etc).
Cindy, are you in Deleware?
My dad was exposed to agent orange when he was in VN. He passed away 12 years ago. We were told that once it was in his body, it never left and attached to his dna. This means it was past on to me and my two sisters. I have the odd growths (dermoids and benign breast lumps), my middle sister is an epileptic and my younger sister has the worst bone problems. Her teeth are falling out (she is only 37 and this has been going on for years) She also had kidney stones at 20! What are we to do? It does make you stop and think. I am praying for all of you. Godspeed.
Wow, we all have been touched by this progressive consumer driven society we have created for ourselves!!!
I have not had a tubal yet. They are doing one when they do everything else on 3/17. And I have no other "foriegn bodies" to my knowledge. But maybe I better ask what they use for it!!
I just can't believe in reading the posts here how supportive of each other you all are. You obviously know how much it means to be in this boat and just need an ear or shoulder.
I guess the way this Dupont thing started to come to the surface was the miscarriages their female employees were having. It is well documented on the internet...at least NOW it is. It was kept under cover for years. The thing is... on all these blood resutls you get back, there are numbers for all the components of this C8 stuff but no interpretaion. AND there is none available even to the doctors. THAT is what this testing is for...to establish what levels, if any, are hazardous. So when you have a few elevated you have to wonder. My biggest fear is for my 11 yr old daughter who has the highest levels of some of those chemicals of our 7 family members who were tested and we have no way of knowing what that means!!!
Also have to wonder about that tephlon...a news magazine show did a story on the "tephlon flu" you can get if you breathe in the fumes from a pan that gets too hot!!! All so the darn eggs that raise our cholesterol don't stick!!!
Well, girls. My son and his wife and 4 yr old just got their tests (C8) back and his wife had an elevated AFP tumor marker!!!
That is for liver cancer and such. I can't take much more of this! She ran out and got a preg test since that was one cause for a benign rise. It was negative. Luckily she is an ER nurse and knows the oncologists there so she can ask for their advice tommorrow. I just pray she has some kind of liver defect or something not horrible. It is definately a Tylenol PM night! Cindi
Interesting....I have an Eastman Chemical plant approx. 45 minutes from my town in TN....The air stinks every time I have to go to that town....which used to be once a week, but I only go there for specialty shopping now (Burlington, Hobby Lobby, etc)...which is rare because I have a craft store closer to me, but I do like the deals at that Burlington. Anyway I'm glad I don't live in that smelly town.
NO WAY is any form of tubal ligation safe. I would never have it done again. I would like to see some studies about how many women go on to experience cyts, fibroids, OVC and ultimately hysterectomy. There IS a correlation, darn it. I agree with what you guys on this thread are saying. Gatsby, my heart aches for you when I read about your dad and agent orange. We are living in a chemical soup and it is poisoning us.
This whole thread is compelling! They are currently doing a "cancer cluster" study on Cape Cod...there is an area where the cancer rates (especially in children) are 200% higher than the rest of the Cape. Guess what's right near there? A military air base and a power plant...coincidence?
One possible consideration that may fit is endometriosis. It is now recognized as an autoimmune disease and there are even a couple of Drs who are (successfully) treating women who are infertile b/c of endo w/ Enbrel, which is a targetted anti-inflammatory (TNFRII) that has been used for RA. I don't discount the chemical connection at all, but I have been sort of focused on immune problems because I also had/have endo and my son has immune problems similar to someone w/ RA and has had at least one TIA episode that was very scary. Endo can also cause your CA125 to be elevated. I already had one endometrioma removed several years back and before that I had had heavy painful periods. The Dr also reacted very rapidly upon finding it on U/S and did surgery w/in a week, which scared me, but in retrospect was much better than this wait and sweat it out approach so many of us are going through.
BTW, my son isn't all better by any means, but he improved significantly on immune treatments such as IVIG, Enbrel and thalidomide (also a TNFa inhibitor - but may not be recommended for a woman in childbearing years). My endo also improved significantly for several years once that endometrioma was removed (2 pregnancies also helped no doubt). It has been 12 years and I am only now having problems again. So, hang in there - there is hope and it may likely be something more "benign" than OC. Best wishes
Thanks for the input, JG. I don't think I could do ANY of this with my kid's health involved. My heart goes out to you.
I really don't think there is a connection to the local plant issues. I am not as concered about the BIG C (guess I just CAN'T go there after all this... that river in Egypt, you know) as I am felling better and finding the answer ...is it all connected? I am just suprised the chemical testing lead to this ovary finding. I am just so tired of them saying that it may take 5 to 7 years for a dx with these immune or rhumatic issues and God bless you, honey. I don't even remember what it feels like to go through a day w/o pain and numbing fatigue.
But thank you all, again, who have hepled me. Cindi
"I don't even remember what it feels like to go through a day w/o pain and numbing fatigue."
Me too Cindi. My exact words to my hubby yesterday were to just dig a hole out back and put me in it and cover me up. He replied with that not being an option, first, the grounds to rocky, second, it's against the law to bury loved ones in your back yard, and third, he'd miss me. I've been dealing with chronic pain issues for so long, I cannot remember what a pain free day is. Maybe we'll figure it out soon.
Ah, ha, yes, the immune system disorders may also be due to the "poisoning" we get from our modern way of life. One interesting note given another post on this forum is that some of the syptoms of some auto-immmune disorders, like Hashimoto's Thyroiditis, mimic radiation poisoning.
By the way, the "teflon flu" is not flu - it is a case of poisoning. I am serious. The outgassing of oxidizing components of teflon is extremely toxic. In the early years of teflon, a man died from placing his lit cigarette in the teflon pan on his table. The burning cigarette caused enough of the poisonous chemical to be released that breathing it killed him.
I worked "in plastics". These ad campaigns, like "Better Living Through Plastics," were first thought up in the late 1980s to counter the opposition of environmental and health groups which complained about the effects of plastics, plastic pollution, and by-products. That, by the way, is when I left the industry. I listened to an ad plan specifically designed to counter complaints about the plastics used in disposable items, and thus the plastic trash generated by each household, items which would take up to centuries to decompose. The next month, I went to the beach. I could not walk anywhere without seeing plastic garbage on the ground. I was appalled by how much of it I could connect 'directly' to me and the efforts of my company. I resigned less than three months later. Really.
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