I am now 27, I have had endometriosis since I was 14 and my first surgery was when I was 15. On Valentines Day to be exact! I have undergone 3 laparoscopy surgeries, a year of the depo shot(15 yrs old) and numerous bc pills and painkillers. I was told then that it was all over my kidneys and spleen.
In 2004 I was told by a chiropractor who studies women’s health and acupuncture not to take bc pills unless it was progesterone pills. He thought it would be good for me to get on some anyway to regulate my estrogen levels. He was doing acupuncture to my stomach and other areas and it did seem to help. Hurt at the time but definitely helped! I didn’t listen though about the progesterone pills. I didn’t think he knew what he was talking about simply because he was still studying it.
In 2007 when I met my husband we thought I was pregnant because of all the symptoms. I wasn’t. I ended up talking to a dr. months earlier and had clomid prescribed to me. I was just waiting on taking them. I thought well maybe this is a sign of my body telling me I was ready to become pregnant. So I took the clomid and got pregnant in nov. 2007.
I've been dealing with some horrific pain till lately something crazy is going on with my body and no one can tell me what to do or where to even start. I just had my first baby 18 months ago, and was told this would help. While pregnant they had to induce me because I had a severe kidney infection, and the babies life would be in jeopardy and mine as well if we waited.
So he was a month early, thank god for him he is my blessing. He does get sick and has respiratory problems once in awhile but other than that he’s healthy. Ever since the birth my problems have been escalating. The cramping is worse, all the time now, I’m nauseous, feel like I’m pregnant (boobs hurt etc.) I have to pee all the time, horrific headaches, had a severe sinus infection and had to be put on nasal steroids and antibiotics for at least the 5th time in a year now.
OK from checking this website I've found I have a hypothyroid problem, got a big knot on my neck noticed it 3 days ago and it has grown. I was waiting on my husbands tax returns to come back because I was filling out an app for help with my surgery (another laparoscopy).
I’ve got all the symptoms of hypothyroid. I can’t get Medicaid to call me back, and just applied in dec. and they denied me and for what reason? we don’t make much. I talked to the women’s clinic yesterday and they told me it sounds like hypothyroid. And that I need to get the app in and have the surgery and I would also have to go to a specialist, then we were interrupted, the call ended and i haven’t gotten a phone call back.
These are people who know me by my first name so its not like they don’t know the history here. It may not be their health in jeopardy but it is mine. I’ve always had a very low immune system so I know how my bodies going to react. Plus I’m severely allergic to iodine. So I guess I just keep calling and bugging someone till they help me.
The doctor who did my other surgeries retired so I went to the doctor who took his spot and delivered my sisters baby. I really don’t trust that the dr. there has the knowledge to take care of me; simply bc when I went to him for the symptoms back 6 months ago he asked what I wanted to do, and said he’s never heard anything like this. (Before I found out about the thyroid) well obviously I’m not the only one!!! So what’s he going to tell me now! The symptoms in my rectum, hips, kidneys, and headaches are all constant. I feel as if my ears are going to burst along with all the pain of the endometriosis as well.
I was diagnosed with Endometriosis in 1997. Suspected Endometriosis since I was 13. I'm now 34. I started out only suffering with symptoms related to my period and it has progressed with time. I'm now feeling discomfort on a daily basis. My current medical regimen is medication. I was lucky, the first GYN I went to diagnosed me with Endometriosis right away. I thought he was an incredible doctor after I read the trouble many women have finding out what is wrong with them.
My thoughts about my doctor vanished later. Right away I went in for a laparoscopy and laser ablation and was told if I wanted children I should not wait. My husband and I discussed it and decided to have children now instead of later. I couldn't get pregnant and was sent to a fertility specialist.
I tried all kinds of fertility meds...nothing worked. My fertility specialist said that my records from my surgery indicated that I had a partial blockage in my left tube but that blockage was taken care of during surgery. For years we tried to have children. Nothing.
Many years later I was divorced and without medical insurance. With my current husband we decided to look into excision surgery with a specialist in GA. First I had to get my medical records of my 4 surgeries to him. I called my old GYN and was told my records burned in a fire. Finally I got them from the hospital where I had my surgery. I had the hospital send directly to the specialist in GA. The doc called me to discuss what he read. I was diagnosed with stage 2 according to the report. He said it was stage 3 or 4....couldn't really tell without seeing me in person.
He said that I had extensive Endometriosis on the bowel which would cause me to most likely need a bowel resection. I also had it in all the normal places and my bladder. He also informed me that my one tube showed a partial block and the other tube showed a full block. It was left that way. There was not much ablation done in all surgeries because there was too much, according to my wonderful GYN(stage 2?). So not only did first doc leave my tubes blocked, he also scarred the hell out of my tubes while doing the laser ablation...to which he got rid of very little on 4 different occasions.
He sent me and my records to a fertility specialist knowing that with blocked tubes there was no way to get pregnant. The issue at hand is why did one set of records say that the one tube blockage was cleared while the second set said he left them that way? Many years later...too late to do anything and I will never be able to have children now.
Reading all of the stories has me scared. And feeling hopeless. I'm 23. I am married and have a 4 year old son. All my symptoms are the same and all I am getting right now is that it may be ovarian cysts but they can't find a mass. The symptoms are horrible, running to the bathroom every few minutes is bad. I can't be sexually active without pain. Can't sleep. Can't eat. Hearing how hard it was for all of you to be diagnosed is scaring me because it makes my situation seem hopeless and endless.
Is it really that hard to get diagnosed? I can't stop the crying. It happens at random moments. For the first time, my periods are changing. I stopped after my normal time frame and three days later started again. I don't want to feel hopeless. I thought I had a chance to get taken care of. I don't want any more of the pain that I have been going through for years. I just want to be better. I know all of you must have felt the same way. I don't have insurance, nor can I afford it. Planned Parenthood said that it is possibly a cyst but there was no mass.
I was diagnosed with endometriosis a year ago after I went to the hospital for the worst pain in my life. I do have a 7 year old and my gyno was surprised I was able to get pregnant with him. I have been on birth control to avoid having a period but I still had bad symptoms, then I was on the lupron for three months. I hated all the side affects and now my bones hurt all the time.
The thing is I need someone to talk to, someone who can give me advise so I found this site. I have been having cramps for over a month every day, even when I don't bleed. My gyno does not understand why the lupron hasn't worked. I'm always tired and I have cramps all the time and the pain shoots down my legs.
Hi To all the endometriosis suffers, I only just found out that I got this and it is hard to believe the doctors told me that I had it for years. The cyst I had in my stomach was huge, they told me that it was a size of a football I couldn’t believe it. When they did the operation they didn't take out the whole thing. That kind of got me worried, but then they said they will give me a needle once a month for 6 months to control it.
I'm not sure if many people have the same problem, but if they did I would love to know if it does keep it under control? One day I would like to have kids and a family, but know I’m not so sure. The other thing is I never ever had any symptoms. I always just thought I had bad periods. I used to leak black stuff before my periods and then I would have my sharp periods for a week and a half. I would just like to say I hope many women be careful and look after your health while having endometriosis. Just always remember stay happy, healthy, and glad to be alive and to think one day we are going to beat this!!! LOVE YOU ALL.
Judi Leigh Taylor
I was first diagnosed with endometriosis about fifteen years again. At that time I was married and unable to get pregnant. I never really had the symptoms that so many woman talk about, such as debilitating periods..etc.
They were bad, but not too bad. A heating pad and rest seemed to do the trick. I did suffer terribly from PMS. My moods were absolutely crazy starting from day 10, before my period began. Still, I never was able to conceive. I had some cysts on my ovaries and was treated with laser surgery to get rid of them.
Now, here I am many years after the first diagnosis of my endometriosis and, I suffer daily. I have cysts on both ovaries. I have a uterine fibroid. My doctor tells me that these things should not be causing me so much pain but still, they do. I do not have medical insurance at this time. I have only had a sonogram done. I worry that the daily symptoms that I am experiencing may be due to something more serious.
My mother had Ovarian cancer and survived it so, I feel that before I just assume this is endometriosis, I have to rule out other things. I am due to see another doctor next week. My pain started about three months ago. It began with a dull ache in my lower abdomen. It slowly got worse as each month went by. It now feels sharp, burning, stinging. I no longer go to the gym three days a week, and it has really taken a toll on my relationship with my boyfriend. It's the worry that has caused so much stress. Thank you all for listening.
I am 38 years old and I had ... keyword had endometriosis. A few years ago I went to my gynaecologist because of severe pain on my left side and horrible periods (blood clots, cramps, heavy bleeding and spotting just about all month)... and I have always had bad periods but I was told that it was normal, so I stopped going to the gyno and just decided that I was a wimp that couldn’t handle the symptoms.
Two years later when I couldn’t get out of my bed due to the aches in my right side I found another gynaecologist and told him my problem. I had a cyst on my right ovary and the tube was "corroded" and possible tumours in my uterus. All this led to a hysterectomy with my right ovary removed and I was left with my left ovary and tube. The pathology report showed that I had adenomyosis. I recovered and I felt great and had no more pain.
Three years after my hysterectomy I began to have that same aches on my right side. Every month it started to get more and more intense. I thought well there is nothing there so why am I hurting and why do I feel that same symptoms. I dealt with that for 9 months. I was taking motrin everyday and when it got bad I would take a pain pill. It got to the point that I couldn’t stand on my feet no more than 30 min without having to sit down.
I tried a heating pad (thinking it was a pulled muscle), muscle creams, and hot baths. I went back to my gyno and he said I had a hydrosalpinx and the left ovary needed to be removed. Well the ache was on my right side not my left side. He said that was "referred pain". So one week before my surgery the problem got so bad on my right side that I went to the ER thinking something bad is wrong.
The ER doctor sent me for a CT scan and it showed that I had a mass in my right rectus abdominal muscle and a huge cyst on the left ovary. OK, so I Google this and the only thing that comes up is endometrioma, read lots of cases and it looked as if that could be my problem.
I sent my CT scan to my gyno and on the day of my surgery I asked him if he read my CT scan. He didn’t look at my CT scan. I told him what I had read online about endometrioma and he said there was no way I could have that because I didn’t have endometriosis when he did my hysterectomy.
So surgery was cancelled because he said he couldn’t help me. So I went to a general doctor that would listen to me, and just by this Dr "listening to me" we found my problem. After surgery I found out that I had endometrioma of the right abdominis rectus muscle, a baseball size cyst, cyst in the left ovary, cyst in the left tube and a brenner tumor.
All this was after a partial hysterectomy. I wanted to tell my story for a few reasons. 1. If your gyno won’t listen find a doctor that will listen to you. 2. You are not a wimp, endometriosis hurts!! 3. Just because you have had a partial hysterectomy doesn't mean you are done with endometriosis. Don't live in pain, don’t allow a doctor to make you feel stupid, find someone that will help you. Today I am endometriosis free (of course I don’t have ovaries) and the only thing I deal with is some hot flashes. I am back doing what I normally do!! It feels so good to not be in pain. Praying for every women with endometriosis, Kim Jackson
I was first diagnosed with endometriosis when I was 28 years old. I am now 48. Throughout the years I have suffered from many different symptoms. Difficult periods, infertile, moodiness. But only later have I been experiencing aches on a daily basis. It started about three months ago. I was at work one day and out of the blue felt a sharp stabbing pain in my abdomen.
It gradually got worse. On and off over the next month, aches in my ovaries and lower abdomen. At this time I am without insurance but I do have a family doctor that I finally contacted and she ordered a sonogram. It came back with cysts on both ovaries and a uterine fibroid. She sent me to a GYN and, I had a pelvic exam done. She told me at that time that the cysts were normal and the fibroid should not be causing me so much distress.
I was relieved that I was not diagnosed with something more serious. I called this doctor a few weeks ago and told her that my pain was getting worse. Her response, "Huh, well I'll put you on Provera for three months, and, we'll see what happens". She also said, "You did not have any of these problems from your endometriosis before, you shouldn't be experiencing them now".
I was not satisfied with that diagnosis. I know my body and, I know that something is wrong. I contacted another GYN and have an appointment with him tomorrow morning. I have been reading all of the stories on this site and feel so sad and frustrated for all of the woman who are suffering so badly. It is frustrating but also comforting because there are so many of us going through the same experiences.
When I was a sophomore in high school I started getting sick all the time. It was also stomach problems. My mom kept taking me to the dr. who kept doing blood tests. My white could and my SED rate would always come back really high, which meant infection somewhere. They would then send me to the ER to get other tests done and make sure it was not my appendix or anything serious. Every time those tests came back negative.
The blood tests continued to come back with high levels and I continued to get sick. For 2 years (sophomore and junior year of high school) I was in and out of the hospital. I missed so much school I thought I was going to have to stay back. I went to at least 3-4 different specialists at Mass General Hospital for Children. They did almost every test under the sun and they came back negative except for those blood tests.
At the age of 16 I went to my 1st GYN appt. @ Mass General. I was very nervous because I was young. I went into the room and the Dr. came in and kicked my mom out. I cried because I wanted my mom there with me. Then the Dr. yelled at me for crying. She said based on my ultrasound results I did not have endometriosis! I found out from one of my specialist that the only way to find endometriosis was through a laparoscopy.
I then decided to change Dr.'s and went to Children's Hospital. The Dr. there did not think I had endometriosis, but said if the medication didn't work then he would do the surgery. The time came and the medication didn't work so he did the surgery. Found out I was Stage 2 of endometriosis. He immediately started me on birth control with no placebo. Eventually as time went on, that stopped working. The next step Lupron Depot injections with add back therapy pills. I would get the injection every 3 months and take the pills every night. He started me on a low dose. I had to get bone scans to make sure I was still getting enough calcium and that my bones were not being harmed by the Lupron.
The low dose stopped working and my hormone levels were too off and I was having a lot of flare ups, so he raised my dose. I have been on that dose ever since. I have a few flare ups here and there, but not as often as I used to. I still get my injections every 3 months and my bone scans every 2 years. Right now things are okay!
Stories - Page 31