This is a common story of being fobbed off with different hormone drug treatment for endometriosis which can leave women suffering with pain and scar tissue without surgery to remove the disease
This is Tonya's story .....
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 2016. 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 doctor 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. It was a quick surgery and I didn't hurt much at all. The doctor 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 birth control pills or Lupron. Like Endometriosis, I had never heard of Lupron either. I decided just birth control pills would work for now. Three months after the surgery my problems are back and so we decided it was time for Lupron.
I researched Lupron 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 2017. I go to the check-up after the shot and my doctor is basically telling me there is nothing we can do now, just wait and see.
He puts me on birth control pills 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 a 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 a second opinion and figured this would be my chance to have something done. 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.
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. 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.
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