Aa
endo nightmare
Hi All!
I was diagnosed with endometriosis about 15 years ago, also a disease called Interstitial Cystitis and polysistic ovary syndrome.
It's been an up and down battle. From surgery, to Lupron, to depot, physical therapy...etc. Adding the IC is just insult to injury.
Just today I was discharged after 5 days in the hospital for pain I was unable to control. My body was such a mess they wondered if it was my gallbladder or appendix. Test after test, doctor after doctor telling me neither were the problem. We came to the conclusion that after going off the depot my endo has most likely continued to grow and because of my polysistic ovary issue my body is trying to menstruate but doesn't have enough of the proper hormones, creating this mess of problems.
So here's my dilemma, or better yet my confusion and frustration. I'm 35 years old, am 100% certain I don't want to bear children myself and have already suffered a miscarriage when I did become pregnant.
I was in so much pain(and have been for many years even on depot, Lupron and surgery to remove it) that I'm desperate to do whatever I have to to get my quality of life back, or at least a quality that makes life worth living.
I've read many stories of women having partial or full hysterectomies as a way to control symptoms and get their life back. But not one doctor will touch me. They say I'm too young. How do I know I won't want to bear children...you get the gist.
In the hospital they had to keep me on Morphine. They sent me home with dilaudid and told me to make sure to see a doctor before I run out to get more. I've had to quit my job and come to terms with starting the disability process. Along with my IC it's unbearable and my quality of life is at its minimum.
Here's my question...Has anyone gone the route of having a hysterectomy, did it work, did you get some quality of life back?
I'm getting extremely angry that every doctor is downright refusing to even discuss the option of hysterectomy because they believe I could change myh mind about bearing children. But I am 100% on my decision for many reasons including if I can't care for myself I can't possibly care for a child. And oh yeah, I'm a lesbian and we both feel if we ever were to have children we would 100% adopt, as I'm adopted and my wife feels carrying a child is not something that she wants to do.
Besides not every woman is interested in having children and that's okay! I have nieces and nephews I'm very happy and satisfied to love and spoil.
I've never seen an endo specialist and know I will be having to make that appointment asap.
If this treatment is something that could improve my and my families life how could they take that decision away from me just because they believe I should feel differently about bearing children.
I know this is quite a lot of info and mostly rants so thanks for taking the time to read through. I'm just looking for some support, information and to possibly feel like I'm not alone, as many days especially these past few days hospitalized, I've felt dismissed, alone and at moments suicidal.
What can I possibly do at this point to change any of this. I won't even go into adding the chronic pain of this bladder disease on top of all this as that just makes it all the more complicated and they certainly won't be removing my bladder! lol
Thanks to everyone!!
I was diagnosed with endometriosis about 15 years ago, also a disease called Interstitial Cystitis and polysistic ovary syndrome.
It's been an up and down battle. From surgery, to Lupron, to depot, physical therapy...etc. Adding the IC is just insult to injury.
Just today I was discharged after 5 days in the hospital for pain I was unable to control. My body was such a mess they wondered if it was my gallbladder or appendix. Test after test, doctor after doctor telling me neither were the problem. We came to the conclusion that after going off the depot my endo has most likely continued to grow and because of my polysistic ovary issue my body is trying to menstruate but doesn't have enough of the proper hormones, creating this mess of problems.
So here's my dilemma, or better yet my confusion and frustration. I'm 35 years old, am 100% certain I don't want to bear children myself and have already suffered a miscarriage when I did become pregnant.
I was in so much pain(and have been for many years even on depot, Lupron and surgery to remove it) that I'm desperate to do whatever I have to to get my quality of life back, or at least a quality that makes life worth living.
I've read many stories of women having partial or full hysterectomies as a way to control symptoms and get their life back. But not one doctor will touch me. They say I'm too young. How do I know I won't want to bear children...you get the gist.
In the hospital they had to keep me on Morphine. They sent me home with dilaudid and told me to make sure to see a doctor before I run out to get more. I've had to quit my job and come to terms with starting the disability process. Along with my IC it's unbearable and my quality of life is at its minimum.
Here's my question...Has anyone gone the route of having a hysterectomy, did it work, did you get some quality of life back?
I'm getting extremely angry that every doctor is downright refusing to even discuss the option of hysterectomy because they believe I could change myh mind about bearing children. But I am 100% on my decision for many reasons including if I can't care for myself I can't possibly care for a child. And oh yeah, I'm a lesbian and we both feel if we ever were to have children we would 100% adopt, as I'm adopted and my wife feels carrying a child is not something that she wants to do.
Besides not every woman is interested in having children and that's okay! I have nieces and nephews I'm very happy and satisfied to love and spoil.
I've never seen an endo specialist and know I will be having to make that appointment asap.
If this treatment is something that could improve my and my families life how could they take that decision away from me just because they believe I should feel differently about bearing children.
I know this is quite a lot of info and mostly rants so thanks for taking the time to read through. I'm just looking for some support, information and to possibly feel like I'm not alone, as many days especially these past few days hospitalized, I've felt dismissed, alone and at moments suicidal.
What can I possibly do at this point to change any of this. I won't even go into adding the chronic pain of this bladder disease on top of all this as that just makes it all the more complicated and they certainly won't be removing my bladder! lol
Thanks to everyone!!
If you want you can read my profile journals. I had a hyster 6 months ago and while it is no cure I feel a lot better. I think a lot of it was mental closure for me because it took 14 yrs to diagnose and even after having surgery in 2007 it took another 6 yrs for someone to listen to me that it had grown back.
Even with the best surgeons that excise the disease Endo can still grow back.
Message me and I will send you the link to my hyster post on my blog it might be of some interest. I don't have PCOS but i have all the symptoms of IC and I had fibroids, rectovaginal endo and bladder endo.
Let me know :)
Even with the best surgeons that excise the disease Endo can still grow back.
Message me and I will send you the link to my hyster post on my blog it might be of some interest. I don't have PCOS but i have all the symptoms of IC and I had fibroids, rectovaginal endo and bladder endo.
Let me know :)
I never even thought of it that way...you make a very valid point, I don't think I am to a hysterectomy just yet but if nothing else took the pain away then it shouldn't matter your age
So sorry you're going through this too. What is it with these doctors who decide that because your a woman you should have a baby, or even keep the option when you know 100% you don't want it. So I'll just sit in pain until I'm deemed old enough to be treated seriously for a serious disease. Yeah right!
I'm neither for or against abortion, but if you don't want to be pregnant once you are they'll get rid of the pregnancy. And if someone chooses to change gender they'll medically take out your reproductive system or even add male genitalia. But if youre sick and need a treatment that can possibly change your life, well that's apparently going too far!
I'm neither for or against abortion, but if you don't want to be pregnant once you are they'll get rid of the pregnancy. And if someone chooses to change gender they'll medically take out your reproductive system or even add male genitalia. But if youre sick and need a treatment that can possibly change your life, well that's apparently going too far!
sorry about your troubles...I am in your same boat but in the very early stages and have not been diagnosed, however I have been suffering from endo like pain for 2.5 years
finally went in and they prescribed BCP's and an ultrasound but I got the feeling she didn't really want to help...told me I most surely had endometriosis but wouldn't do a hysterectomy because I was to young
I can't have children as my husband had a vasectomy before we met/married...If I can't ever have children with my husband then what's the point? I get that it might not work but it's worth a shot in the long run
finally went in and they prescribed BCP's and an ultrasound but I got the feeling she didn't really want to help...told me I most surely had endometriosis but wouldn't do a hysterectomy because I was to young
I can't have children as my husband had a vasectomy before we met/married...If I can't ever have children with my husband then what's the point? I get that it might not work but it's worth a shot in the long run
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