What a misunderstood disease...I've been battling this disease since I was 14 and I am now almost 36! Of course I was not even diagnosed until I was almost 20. I grew up in a small city where most of the gynecologists were mostly old men and so the one I was going to told me and my mom that my pain (cramps that kept me home from school every month for at least one day), my unbelievably heavy periods that caused me to pass out at school on occasion from fatigue, the mood swings that made my family think I was possessed by the devil at times...was all in my head and that I was just looking for attention.
ARE YOU KIDDING ME? Who can fake that kind of stuff and who in the world would? Thank god my mother, who I think is an absolute saint, kept pushing and supporting me...she still does! I have had 15 surgeries to date, including a hysterectomy (I do still have one ovary that managed to survive all the other crap, one didn't but I'll get to that later!). I never really stopped having symptoms following the hysterectomy. I have struggled for several years with severe aches in my left side. It is horrible.
I've had different doctors suggest and treat the pain for first endometriosis, then it was found at one point that a ligament some how got wrapped around my left fallopian tube and it cut off the oxygen flow to my fallopian tube which died and turned into a crystal basically.
Then when they removed the ovary the symptoms didn't go away. So then it was thought that I had a hernia, which apparently I did, but it was most likely from my work in construction.
But I've had to have the hernia repaired twice after the initial repair. And guess what? The pain has not gone away. Now I'm seeing a specialist who performed pain mapping on me 10 years ago when the problem first started and she couldn't find anything at the time.
So now she has tried trigger point injections and nerve medications. The trigger point injects were supposed to give me up to a week of relief...I'd get couple hours if I was lucky.
So she has tried medication treatment like gabapentin and topiramate. Both of which did give me some relief but the side effects were unbearable. Especially the topiramate, my hands and feet were getting the sensation of "pins and needles" like they'd been asleep.
It would happen at different times during the day, but it would wake me up all through the night which I couldn't deal with because my job requires me to be alert and well rested.
So here I am, still in distress, still no answers and I really, in my non-medical opinion, is most likely endometriosis that is still in there. But because I've had so many surgeries, my doctor doesn't want to be invasive again. Again...ARE YOU KIDDING ME?
What else can I say that you haven't already lived through or heard about? Life goes on, I cope as does everyone, but it is good to know that there are sites like this out there where we can at least be honest, talk about it and thank god for small things like that!
Back in 2006 I was told I have endometriosis, PCOS and a blocked tube. My partner and I have been trying for a baby for 5 yrs now. Ever since I started my periods back when I was 13 I have never had a regular period, they have always been all over the place, so after a yr of trying for my first son who is now 9 yrs old, I had the coil fitted.
Then after a couple of years we thought about having another child so the coil was taken out, we had been trying for about 2 yrs with no joy, so I went to the doctors and he sent me to a specialist. After going for endless meetings with him he sent me for a laparoscopy operation and I was told about my endometriosis and PCOS.
Nothing then was further done, 3yrs on and going to the doctors and trying to get me some sort of treatment, he has put me on hormone replacement tablets. This was only done as I found a private consultant, and told my doctor that I was going to see him, so like magic I was sent for blood tests and was given these tablets (norethisterone).
Now I am waiting for my private appointment to come through. After so long of fighting all the way and getting brick walls. I don’t hold any hope any more, of getting pregnant or getting treatment.
I need to do something as the symptoms are getting so bad now it affects my daily work. I don’t have one day where I am not in distress. I can't cope any more and back in Jan of this yr I tried to end my life due to this. Now I realise that it was stupid but it hurts me that much I just can't handle it any longer.
I will start of my Endometriosis story by giving a little background on who I am. I am 26 years old, married for 5 years, 2 beautiful children that I am so thankful for. My children are my life and they have made my life so much better. If it wasn't for my children I really think that Endometriosis would really take over me and I wouldn't be who I am today.
Now lets go back 4 years to 2015. I had just had my son and things were going good. He was about 3 months old. I woke up like any typical morning but this particular morning I could hardly walk and the agony was so bad I had to have my husband stay home.
I called my Dr. of course to see if I needed to be checked. They got me in that same day. I was told that my uterus was swollen but it could be from just having a baby.
They send for ultrasounds and tests which come up fine. I go to my appointment to talk about the tests and see what to do next and the Dr suggests that we do a Diagnostic Laparoscopy. I was very scared because of the unknowing, what would be in there, if anything at all.
The surgery was scheduled for July 13, 2015. It was a quick surgery and I didn't hurt much at all. The Dr came in and talked to me about what he had found. I was a little out of it but I did hear him say I had some Endometriosis and chocolate cysts.
Endometri what? I had never heard of it at all. At my post appointment 2 weeks later he just says what the next steps are. My choices were bcp's or Lupron. Like Endometriosis, I had never heard of Lupron either. I decided just bcp would work for now. Three months after the surgery my problems are back and so we decided it was time for Lupron. I researched it as much as I could but that shot was hell on earth.
I was working while on it but I could hardly stay well enough to do my job and was just not myself. After 6 months I was finally through with this treatment. It is now April 2016. I go to the check-up for after the shot and my Dr is basically telling me there is nothing we can do now, just wait and see. He puts me on bcp again. This time YAZ and I don't take because I just don't like bcp'c at all.
I go back a month later because my body wasn't feeling right and the Dr argues with me a little about the bcp helping a little. I just told him we were going to be TTC soon, so it doesn't matter anyways. So, my husband and I were trying to get pregnant with our second baby. I mean this is a big time in our life.
I thought getting pregnant would be pretty easy and not take too long. I was wrong. We started trying in May 2016 and I didn't get pregnant until February 2017. I know it doesn't seem like a long time to some that have been trying for years, but being told nothing was wrong all the time and that it takes time sometimes really never helped.
But the day we found we were pregnant with our second baby was so great and we were so happy it didn't matter how long it took. I had a few issues with Endometriosis in the pregnancy but my Dr's kept telling me that it couldn't be Endometriosis. Pregnancy helps endometriosis, is what I heard for like 3 months of the pregnancy.
Even through all of that I had my baby girl on October 9th, 2017 and none of the crap the Dr's put me through mattered any more. I was so happy to have my son and my baby girl. After having my baby I was put on numerous bcp's like IUD, Yaz, mini pill. I didn't have any luck with any of them and I will leave it at that.
My daughter was only a few months old and I call the Dr. to tell them I am having spotting and a lot of problems between my periods. They tell me this is normal from having the IUD taken out. I really didn't understand because
I only had the IUD in for 3 weeks. But I go in to be checked out and the DR wasn't happy at all and sends me home feeling the same. I call my primary Dr and asked to be seen. They get me in the same day. My primary Dr is nice and I like her but I was left in distress and no answers.
I had tests which showed a cyst but the cyst disappeared. I am so frustrated with the symptoms and the Drs I decided not to go back to any doctor, and I didn't until September 2018. That weekend the symptoms were so bad I couldn't walk and nothing was helping. So, Monday I call to be seen and they get me in on that Tuesday. I go in determined to get answers but I got nothing.
My Dr was rude and told me my pain couldn't be as bad as I was saying it was. I am talking agony that was making me sick and where I couldn't take care of my kids. My body was doing something through the next few months that nobody can explain or tell me what it is.
I weighed 163 in Sept. and I in January I went to see my primary because I was so fed up with all my problems. She did every test there was and only found a cyst on my ovary. I had gone to my gyn prior to that and had an ultrasound done but never heard anything of it.
My weight was still going up from 163 to 176 to 183 and no reasons. I am told to get a follow up through my gyn for this cyst, and I do after while and my gyn tells me there is nothing wrong and just puts me on another bcp. I call my primary to let them know about what my gyn said. They call me back and tell me to go back or get a second opinion.
I chose second opinion and figured this would be my chance to have something done. (now through all of this I am having pain in my back, abdomen, pelvic area, burning when I urinate, problem bowel movements and nausea...all of this and none of the drs would tell me why or give me anything for the pain.
I did get some tylenol 3's but when I asked for a refill they refused it.) Now I am set up for an appointment with a new gyn. I am relieved and happy. She listened better than my previous gyn and understands. She said we should do a Diagnostic Laparoscopy and D&C. My laparoscopy was scheduled for July 24th 2009. Now that is almost 2 years of doctors with no answers.
The weeks leading up to the surgery were nerve racking but I made it through alive. The surgery was awful, a lot more so than my first in 2015. My husband talked to my gyn while I was in surgery and he tried to explain what my Dr had found.
I went to my post op and she explained it to me a little better. I had a lot of scar tissue, it was on my uterus, adhering to my abdominal wall, on my bladder and ovaries. She removed a small cyst on my right ovary. My recovery wasn't hard but it wasn't easy, especially with 2 kids running around.
But now my options are get pregnant now, go on Lupron or a bcp because she says I need to have my uterus removed. That is scary. I am not ready to have another baby and I don't want Lupron. She put me on a bcp but I won't take it. I don't see how it is supposed to help with symptoms.
But for right now I am just going to deal with the pain. We plan on trying for another baby in about 6 months so I see no reason in going on anything just for 6 months. I am still suffering but I know that with Endometriosis there are many choices out there. It is something that is trial and error. God only knows how bad this affects me.
I was diagnosed with endometriosis in November of 2018. It happened almost out of no where! I mean I had always had bad cramps, but my period was pretty much regular. My cramps weren't as bad when I was younger (12 I started my period) but they seemed to get worse as I got older. I remember being a Junior in high school, and I went to the nurse because my cramps were so bad I could barely stand.
My grandparents had to come pick me up and my car, since I was unable to drive. I was so sick that day, but medications such as Tylenol, Ibuprofen, and Motrin always helped. My pelvic cramping started in an odd form that I have not told my doctor yet, but am going to once I have my next appointment in November of 2009.
One day in July of 2008 I was intimate with a guy I hadn't known for long, and well he was really rough. Rougher than anyone I had ever been with in my short sexual active period. That's when the pelvic throbs on the left side of my pelvic area started, as well as the very painful period, the bad lower back ache, the fevers, the headaches, the painful urination and bowel movements.
I was scared, and worried, and I thought that I was possibly pregnant at first. I decided to do a home pregnancy test, and it came out negative. I met a wonderful man, that I am still with today, and he encouraged me to go so a gyno. I did.
My doctor was very nice, he ordered an ultra sound, and diagnosed me with endometriosis without a laparoscopy. He put me on birth control to control my periods so that I have only 4 periods a year.
I can say the problem is not as bad as before, but when every third month comes to have that period it feels like hell. My back feels like sharp knives are slicing my spine, and I have fever during it, and it hurts to use the restroom, or to move.
My posture is wrong. I have not been able to see another doctor or set up another appointment with the doctor I am seeing now because of financial reasons, but the symptoms feel like they destroying my life.
Sometimes I cannot be intimate with the man I'm in love with, and sometimes I'm so sick, its not fun. I feel like a fraud though, like everyone is looking at me and wondering what is wrong when I look fine, but my body is on LEVELS OF PAIN THAT THOSE PEOPLE DON'T EXPERIENCE!
I have not done a laparoscopy yet, and I'm scared and my condition seems to get worse. I have lots of choices to make, because this is all new for me. I just hope I get better, and I hope its not doctor after doctor.