Post by lanacoral on May 2, 2014 19:07:32 GMT -5
Hello,
I'm 28 years old, I live in Nova Scotia Canada, and boy am I dealing with a lot of dumb endo junk!
I have interstitial Cystitis- which often goes hand in hand with Endo.
I've had painful periods as long as I can remember, but it wasnt until I was put on estrogen based birth controls that things really ramped up. Suddenly my periods were landing me in the hospital and I was in more pain than I could physically stand. Prior to this I could usually manage the pain with pain killers. I'd never been assessed for endo, or anything else and this was about 7 years ago.
Over the past 7 years I have been on more birth control than I can count and in the hospital far too much. My endo symptoms have ruined my birthday, holidays, vacations, and cause me to black out and or vomit from the pain. Even narcotic drugs at the hospital did not stop my pain, and years of pain killers have rotted my stomach.
Living in Canada I have had a very hard time getting help. I have literally waited 6 months to see a gyno only to have her not even examine me and write me a script for yet another birth control after my insistence they werent working. I don't have health coverage and many of the pills would cost upwards of 250$ just to waste!
Finally things got to a breaking point the last time I wound up in emergency. I told them my endo pain made me feel suicidal, and I wanted to be sent to the specialists who deal specifically with endo. They finally listened, but it took another 6 months of waiting. My first visit was 2 hours! Unheard of. They concluded that they do believe I have endo (every doctor I've seen has said that, so no big deal) but because of other risk factors they did not want to have a scope. I sincerely believe I am one of those people who has endo in places like their sciatic nerve, and diaphragm. All of the pain I experience in my body started when the periods escalated, and I feel pain in these places during periods and it is unbearable. I sometimes get it when I ovulate as well, but it rarely seems to be any other time at that extreme level. (I have read endo can end up in these places)
They decided to put me on VISANNE and wow it changed my life. I don't get a period anymore. I can actually live my life. I still get pain and bloating, and the pain might put me in bed for 4-6 hours. but NOTHING like it was before. (at this point I've been on it 4 months) The plan is to stay on it non-stop for a year and get re-assessed.
But I have other issues which I'm not sure if they've always been there, or if progesterone birth control brought them out. I want to be clear, I have been checked multiple times for every time of infection and hormonal imbalances etc.
So my other symptoms: (A LITTLE TMI I apologize)
-thinning of the opening in the vagina, and the space between it and the bum! So thin it now tears, fissures, and hurts all the time in general
-painful sex, as a result of my thin opening (this has been present for th epast 4 years since I started progesterone birth control, and stopping the BC for a year didn't change it)
-extreme outter vaginal skin irritation whenever I have sex, we're talking yeast infection symptoms with NO YI present. Gets much worse when I ovulate or land on the week when I *would* have my period
-fissures from sex, excersize, or even stepping into the tub.
After many tests, the gyno I am seeing thinks I may have an underlying autoimmune disorder causing these vaginal issues. I have been put on every estrogen cream, steroid cream, ointments, sitz baths etc, this has been a problem for YEARS and nothing changes it. Even when I suffer through NO medication (as I did for a whole year to rule meds out) these symptoms persist.
I am so happy to have my IC under control, and I am also happy to finally be having relief from period pain. But these are symptoms are ruining my life. I have been with my partner for almost 7 years and we have done everything to improve our sex life. I've done physiotherapy, chiro, massage, dilators, lubes, creams/ointments, pelvic massage, naturopath, been to workshops for sex for people with disability and illness, read every book, did therapy and everyone came to the conclusion that my sex pain is that little bit of skin that wont stop tearing. Because it tears, I get pelvic floor spasming. I waited for a person I loved, and I feel like I am losing time and missing out on a great experience. Plus I get concerned about having babies, and the docs wont even talk about that with me
So I am being referred to a dermatologist and a rhematologist (sp) because of these vaginal symptoms and because of some other chronic symptoms.
From what I have read along with symptoms, I think autoimmune progesterone dermatitis may be a strong possibility. I am wondering if anyone on the forum has experienced that? (it often goes with endo) Also the doctors are going to assess me for Bechet's (another autoimmune for which Ihave all the symptoms) and SJogren's Syndrome (again, I have all those symptoms too, yuck) All three of these things affect your vagina, can go hand in hand with endo and/or IC and I have all the other symptoms. *sigh* so I'm waiting months to see if I can be tested for them.
So from this forum I am hoping to find out:
-Does anyone else here suffer from vaginal tearing/fissures, and how do you cope? What works for you? Is it chronic etc?
-Anyone else using Visanne? What are your experiences?
-Anyone have autoimmine progesterone dermatitis?
-Anyone else in Canada struggling with long wait times to get help? Any tricks to get around it?
-does anyone else have OTHER illnesses or autoimmune problems that go with your endo?
-has anyone recovered from painful sex? how long did it take? what worked for you?
I hope I can offer something to the forum as well. I'm not sure because I'm still technically early in my journey.
I am considering taking part in two local studies for women who experience painful sex too.
Wow this is such an all over the place rant, can you tell I needed to just get this off my chest?
I'm 28 years old, I live in Nova Scotia Canada, and boy am I dealing with a lot of dumb endo junk!
I have interstitial Cystitis- which often goes hand in hand with Endo.
I've had painful periods as long as I can remember, but it wasnt until I was put on estrogen based birth controls that things really ramped up. Suddenly my periods were landing me in the hospital and I was in more pain than I could physically stand. Prior to this I could usually manage the pain with pain killers. I'd never been assessed for endo, or anything else and this was about 7 years ago.
Over the past 7 years I have been on more birth control than I can count and in the hospital far too much. My endo symptoms have ruined my birthday, holidays, vacations, and cause me to black out and or vomit from the pain. Even narcotic drugs at the hospital did not stop my pain, and years of pain killers have rotted my stomach.
Living in Canada I have had a very hard time getting help. I have literally waited 6 months to see a gyno only to have her not even examine me and write me a script for yet another birth control after my insistence they werent working. I don't have health coverage and many of the pills would cost upwards of 250$ just to waste!
Finally things got to a breaking point the last time I wound up in emergency. I told them my endo pain made me feel suicidal, and I wanted to be sent to the specialists who deal specifically with endo. They finally listened, but it took another 6 months of waiting. My first visit was 2 hours! Unheard of. They concluded that they do believe I have endo (every doctor I've seen has said that, so no big deal) but because of other risk factors they did not want to have a scope. I sincerely believe I am one of those people who has endo in places like their sciatic nerve, and diaphragm. All of the pain I experience in my body started when the periods escalated, and I feel pain in these places during periods and it is unbearable. I sometimes get it when I ovulate as well, but it rarely seems to be any other time at that extreme level. (I have read endo can end up in these places)
They decided to put me on VISANNE and wow it changed my life. I don't get a period anymore. I can actually live my life. I still get pain and bloating, and the pain might put me in bed for 4-6 hours. but NOTHING like it was before. (at this point I've been on it 4 months) The plan is to stay on it non-stop for a year and get re-assessed.
But I have other issues which I'm not sure if they've always been there, or if progesterone birth control brought them out. I want to be clear, I have been checked multiple times for every time of infection and hormonal imbalances etc.
So my other symptoms: (A LITTLE TMI I apologize)
-thinning of the opening in the vagina, and the space between it and the bum! So thin it now tears, fissures, and hurts all the time in general
-painful sex, as a result of my thin opening (this has been present for th epast 4 years since I started progesterone birth control, and stopping the BC for a year didn't change it)
-extreme outter vaginal skin irritation whenever I have sex, we're talking yeast infection symptoms with NO YI present. Gets much worse when I ovulate or land on the week when I *would* have my period
-fissures from sex, excersize, or even stepping into the tub.
After many tests, the gyno I am seeing thinks I may have an underlying autoimmune disorder causing these vaginal issues. I have been put on every estrogen cream, steroid cream, ointments, sitz baths etc, this has been a problem for YEARS and nothing changes it. Even when I suffer through NO medication (as I did for a whole year to rule meds out) these symptoms persist.
I am so happy to have my IC under control, and I am also happy to finally be having relief from period pain. But these are symptoms are ruining my life. I have been with my partner for almost 7 years and we have done everything to improve our sex life. I've done physiotherapy, chiro, massage, dilators, lubes, creams/ointments, pelvic massage, naturopath, been to workshops for sex for people with disability and illness, read every book, did therapy and everyone came to the conclusion that my sex pain is that little bit of skin that wont stop tearing. Because it tears, I get pelvic floor spasming. I waited for a person I loved, and I feel like I am losing time and missing out on a great experience. Plus I get concerned about having babies, and the docs wont even talk about that with me
So I am being referred to a dermatologist and a rhematologist (sp) because of these vaginal symptoms and because of some other chronic symptoms.
From what I have read along with symptoms, I think autoimmune progesterone dermatitis may be a strong possibility. I am wondering if anyone on the forum has experienced that? (it often goes with endo) Also the doctors are going to assess me for Bechet's (another autoimmune for which Ihave all the symptoms) and SJogren's Syndrome (again, I have all those symptoms too, yuck) All three of these things affect your vagina, can go hand in hand with endo and/or IC and I have all the other symptoms. *sigh* so I'm waiting months to see if I can be tested for them.
So from this forum I am hoping to find out:
-Does anyone else here suffer from vaginal tearing/fissures, and how do you cope? What works for you? Is it chronic etc?
-Anyone else using Visanne? What are your experiences?
-Anyone have autoimmine progesterone dermatitis?
-Anyone else in Canada struggling with long wait times to get help? Any tricks to get around it?
-does anyone else have OTHER illnesses or autoimmune problems that go with your endo?
-has anyone recovered from painful sex? how long did it take? what worked for you?
I hope I can offer something to the forum as well. I'm not sure because I'm still technically early in my journey.
I am considering taking part in two local studies for women who experience painful sex too.
Wow this is such an all over the place rant, can you tell I needed to just get this off my chest?