Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I am so damn angry!!
I have just been reading a thread on here from an 18 year old girl, whose doctor has given her two choices for treatment - one of which being hysterectomy - at 18 years old?! It's ridiculous, why the hell are there not more treatments, why do us endo women have to suffer in silence or have major, life altering surgery to try and improve our quality of life?!
It makes my blood boil that more is not been done to find treatments that work for endo, that there is not more research being done into what causes it, if it's genetic, if there is anyway they can possibly prevent it, etc.
The doctors aren't even any good with diagnosing it, I was in and out of hospital from about 13, and I was 20 before I was diagnosed. I was treated like a hypochondriac, and still have been scince, only we endo women know how bad the pain can be - why are they not researching these things?!
I know my consultant was part of a research team last year, who were looking at mice with endo, and found that the mice with it had more iron in their pelvis's - i read about it on the internet and saw my consultant was part of the team so I asked him about it, but he said it was only in the very beginning stages of research!
The doctors don't even know how the enometrial tissue escapes back out into our bodies - they have a theory that it goes through your fallopian tubes, but as my tubes were completely blocked and I still got more endo attach in other places I think that kinda blows that theory well out of the water!
It makes me so angry that so many people don't even know what endo is, and if you tell them they have the attitude that it's just us women moaning about that time of the month - I have even had this kind of attitude from other women who don't know what it is!
Most of all I get so angry, annoyed, and frustrated because (and sorry to be a little sexist here - guys I still love ya lol!), if this were an illness that men were suffering from, and they were trying to live with this pain and their only treatment options were some pills that may not work or castration, you can sure guarantee that there would be immediate research into it!!!
We endo women need to unite and get some kind of petition or something going to make people sit up and takie notice of this devastating illness!
I have just been reading a thread on here from an 18 year old girl, whose doctor has given her two choices for treatment - one of which being hysterectomy - at 18 years old?! It's ridiculous, why the hell are there not more treatments, why do us endo women have to suffer in silence or have major, life altering surgery to try and improve our quality of life?!
It makes my blood boil that more is not been done to find treatments that work for endo, that there is not more research being done into what causes it, if it's genetic, if there is anyway they can possibly prevent it, etc.
The doctors aren't even any good with diagnosing it, I was in and out of hospital from about 13, and I was 20 before I was diagnosed. I was treated like a hypochondriac, and still have been scince, only we endo women know how bad the pain can be - why are they not researching these things?!
I know my consultant was part of a research team last year, who were looking at mice with endo, and found that the mice with it had more iron in their pelvis's - i read about it on the internet and saw my consultant was part of the team so I asked him about it, but he said it was only in the very beginning stages of research!
The doctors don't even know how the enometrial tissue escapes back out into our bodies - they have a theory that it goes through your fallopian tubes, but as my tubes were completely blocked and I still got more endo attach in other places I think that kinda blows that theory well out of the water!
It makes me so angry that so many people don't even know what endo is, and if you tell them they have the attitude that it's just us women moaning about that time of the month - I have even had this kind of attitude from other women who don't know what it is!
Most of all I get so angry, annoyed, and frustrated because (and sorry to be a little sexist here - guys I still love ya lol!), if this were an illness that men were suffering from, and they were trying to live with this pain and their only treatment options were some pills that may not work or castration, you can sure guarantee that there would be immediate research into it!!!
We endo women need to unite and get some kind of petition or something going to make people sit up and takie notice of this devastating illness!
I know and hear your frustration loud and clear. You have every right to be angry and I full identify with you! It is so hard to continue fighting the never-ending pain day in and day out with no sense of urgency in the majority of the medical field. I am thankful that this is a disease that won't kill me...nonetheless, it is still one that far too many of us suffer with; not to mention our families and friends as well.
I make sure to do my part and research all I can, build my own team of support, and go full steam ahead to take charge of my own treatment options!
Make me a card sometime! :0)
Jessie
i was interested though that you thought it was inappropriate for a young woman to be offered hysterectomy as a treatment option. while i don't think this should ever be presented as a cure-all (which it so often isn't) or coercion of any form put on anyone to have this done, as far as i understand it, this is still a viable treatment and it has angered me that, because i am young, nobody will discuss it with me! there are plenty of women my age (22) who might make the choice not to have children, and it is my feeling that this ought to be accepted too, and this treatment option made available to them
I genuinley understand what you mean that not being able to get a hysterectomy done at a young age is frustrating.
They told me at age 20 I'd never have any more kids naturally, (luckily I had a son at 18), and I did not want to go through IVF - (I've been poked and prodded around enough, and didn't want to go through that to have a baby.)
I asked about a hysterectomy when they opened me up then, and was told I was too young, then I had another 2 surgeries to remove cysts and adhesions and before the last one I begged them to give me a hysterectomy, (I was about 25 then), and was still told no I was too young.
I have since moved, and attend a different hospital now, and I have still had to fight for it somewhat - I had to see two different Drs for them to assess I knew what was involved etc. and had to agree to them leaving my ovaries which means anywhere else I've got the disease it still flares up every month, (they actually had no choice but to take one -I was keeping my fingers crossed it would be both!), but I finally got a hysterectomy a year ago this month at 28. So I do fully appreciate that for some hysterectomy is the only option.
However that was my point - is it not disgusting that women of our ages are faced with so few treatment options, that we have to consider such drastic surgery as our only real options?!
Even if you have decided now that you don't want children now, your feelings on this may change in the future, and if they did a full hysterectomy and took your ovaries too, which is the only way you won't still get flare ups every where else each month, you will have to be on HRT at 22 years old - which is not good! They can only keep you on it for so long, and you will be at increased risk from osteoporosis, and other things, that you may have to face at 40, while other women don't face such things until their 70's, so it is not a perfect solution!
I still get pain in other places I've got endo, but don't have the agony of an actual period, so it isn't ideal, and doesn't always work as a treatment option either, there are women that still suffer terribly even after hysterectomy!
As I said I'm sure if the only choices men faced to cure them of something was an injection or tablets that may not work, or been castrated (which is the equivalent of giving a woman a full hysterectomy), then they would be breaking their necks to come up with better and more effective treatment methods.
I hope this clears up what I was saying ;-)
Well, just aint him but just going threw so much right now with my health its stressing my body out big time. I feel like there might be something more wrong. Its just one bad thing after another with me.
I had knee surgrey Oct. 22 of 2005. So i had it 3 years ago well when that happen i got tendinitis in my left neck and shoulder. Then the Endo and now the ulcer. I just keep breaking down and i know my body is far from stopping. Dont want to keep venting and keep on but god only knows and you all how sick and tired i am with this crap.
Sorry for my words but I just cant help it. My body is just so stressed out i feel like if people around me dont start listening and stressing me that my body is just going to loose it and give up on me. I dont want that to happen. Just want the pain to stop. To make it go away. Do whatever it takes for them to find out how this endo happens why and all that. My body is getting to tired and wore out I just wish I knew what to do. *sigh* I want to be heard and I will do anything to do so.
I try to post awareness of Endo around my job because I have it. But it's hard, because once I tell I have it, then I risk being treated differently and now they know why I have handicapped parking, etc. etc.
But you're right, if it were men, it would certainly be different. But we could start a letter writing campaign. We certainly write a lot here. We just have to choose who to write to. Who will give us exposure. Who will do the right thing with any money raised, etc. We can do it. Just, what it?
thanks for writing back - i know what you mean, and certainly i have every sympathy and wish you all the best
It gets even more frustrating to see ED drugs everywhere...at least they still have their organs. Now it's time to put all that money and time into helping ours.
Un freakin, believeable!:((
Is there anything we can do?...