Endometriosis Stories - Page 22

United States
Dec 2008

First I would like to thank everyone for their stories! I am 22 years old and recently had my second surgery for endometriosis. My first was 2 years ago after I switched OBGYNs and was diagnosed with endometriosis. I had been seeing the same OBGYN (a female) who was supposed to be "one of the best in South Jersey." I had so much pain during periods and even between periods, I was in extreme pain with cysts growing on my ovaries daily. I wound up in the hospital with 7 doctors, including my former OBGYN, each said nothing was wrong!

I left the hospital feeling helpless and to be honest, crazy. I knew there was something wrong but with 7 different doctors looking at you and telling you everything looks normal, I thought I was nuts! I switched to a male OBGYN and at the end of my first examination with him, he looked at me and said "I'm 99% sure you have endometriosis." I had no idea what endometriosis was at that time but I was relieved- at least we had a diagnosis.

I had the surgery about a year later and the endometriosis was all over the place. I was in the operating room for more than an hour and a half (normally, these surgeries last about 45 min). I was so excited that my doctor had actually listened to me and found the cause of all the pain. However, even after the surgery, I was having painful periods, so my doctor had me take birth control around the clock, with no periods at all. Even if I had periods, the cramps were not unbearable so I dealt with it.

In early 2008, I started having more symptoms- pain with intercourse and sharp pains in my abdomen. It was intense and completely unbearable. I have been with my boyfriend for 5 years and only back before my first surgery did this bother me. I spoke with my doctor about 7 months later and we scheduled another surgery. I am currently recovering from that surgery, it's been about a week since I had it.

I'm only 22 and it feels horrible to be going through all of this. However, I'm lucky to have found a doctor that actually listened to me and cares about what I say. I feel like a weight has been lifted off my shoulders. I'm no longer looked at the girl who is lying or the girl who wants drugs. I'm looked at as a patient with endometriosis and that feels great.

If you are reading this and have not been diagnosed because of the doctors, seek other physicians. It will make all the difference. If I hadn't switched, I may still be in horrible pain and suffering. At least now, even though the endometriosis came back, it's not as bad as it used to be and even if it comes back again, I know I can have the surgery to remove it and be fine for a while.

I'm still nervous about my chances of having children but right now, it's not an issue. I'm just trying to get more information from those who have had problems getting pregnant, so if I do have problems in the future, I will know how to deal with it. This disease is frustrating but I'm trying to deal with but I'm not letting it control my life. I hope everyone else with it can find some peace. It also helps to know about what your dealing with so do the research and look at pictures. The more you know, the better things will seem. Thank you all for your stories and thank you for taking the time to read mine! 

United States
Dec 2008

I am a 27 year old mother of two. And I have just been diagnosed with endometriosis. I still haven’t really wrapped my head around it, but ever since I was a teenager I suspected I had it. My periods were always heavy, the pain was always severe, even when I was ovulating. I got pregnant when I was 16, which resulted in an abortion. I tried and tried and tried to get pregnant again after that to "replace" the baby I had aborted, but didn’t get pregnant for over two years.

I had my first son when I was 19. After I had him, I had the depo shot. It screwed up my period and hormones horrible, so I only had that once. The periods were getting increasingly worse, heavy and painful. Every time I went to a doctor/GYN I was basically told take birth control pills and call it a day. They never helped. I got pregnant again when I was 21, which resulted in another abortion. I was abstinent after that for a year or so, and the periods still came heavy.

Fast forward, I get pregnant and married at the age of 24. After the birth of my second son, I had a tubal ligation. Everything since then with my period went downhill. Everyone had told me these horror stories of having their tubes tied and their periods getting out of control, so that's what I assumed all this was.

For the past 3 years I have seen numerous gyn's, lost jobs for having to call out of work bc the bleeding was so bad and the pain was making it impossible to move. I would go to the ER and they would send me home without any tests just saying it was a heavy menstrual period and that I need birth control pills, which in the end defeats the purpose of the tubal ligation I had done.

So finally just this past week after being in and out of the hospital and doctors offices, I have a ultrasound done which shows that my right fallopian tube was fluid filled and that it would have to be removed. Well surprise surprise, when they went in for that they discovered I have a bad case of endometriosis. They removed or burned what they could, but all that did was "flare" it up as the doctors put it. I am on a very strong pain medicine and it hardly even helps.

Everything now makes sense to me, all the pain, all the symptoms I have had all these years. I have spent so much time online, looking for other stories, other womens "tips" and just actually some hints at this. My husband now knows that I truly mean it when I tell him intercourse is painful. Any help on that part would definitely help. Please feel free to contact me at my email above. I would love to hear some personal stories and advice. Thank you and take care!! 

Dec 2008

Here I am....battling endometriosis...again! I've had four surgeries to remove endometriosis over 3 years, the last being about 6 years ago. I thought it had finally gone but I'd been ignoring those niggling feelings I've been having for the past 8 mths. The heavy, cramping periods, pain when ovulating, tiredness, bloating and back ache. I can't deny it any more. Off to the gynaecologist for a diagnosis (again). 

United States
Dec 2008

Hi my name is Laura and I'm almost 22. I have had an unconfirmed case of endometriosis since I was in 8th grade. My mother and grandmother had endometriosis. My mother was afraid to put me on bc pills because she thought it was giving me the right to be sexually active at a young age, so I suffered. I would bleed till I was pale with blue lips and actually pass out from the pain. I would vomit and have constipation followed by extreme diarrhoea.

Finally when I asked her about taking out my uterus in 10th grade she finally gave in and took me to the gyn. The dr was very rude and said that I couldn't handle pain. My mother also had the very same symptoms as I did when she had her period. I'm now finally, after trying 10-15 different methods of bc (birth control)which alleviated the cramps, but nothing else, and gave me such bad migraines that even migraine pills couldn't help and putting me in the hospital a few times, and scaring my family and boyfriend of 7 yrs.

I finally told the doctor to be more aggressive or I'm finding a different doctor. I will be having the laparoscopy this month. Part of my complication is that I have a heart shaped/bicornuate uterus, which from what I've been told gives me a 25% greater chance of having endometriosis. They wanted to try the Mirena thing, but I don't want to go through 6 months of hell just to find out it doesn't work, or my body reject it, or it not fit from the deformity.

I don't want kids. I'm the fun loving fancy free type. I LOVE to travel and explore third world countries and forests etc. I recently went into the jungles of Belize. So much fun and so much beauty. I want them to take out my uterus, but they say no doctor will. If any one wants to chat just e-mail me. I'm interested in knowing someone who's going through the same. It's nice to have someone to relate to. 

United States
Dec 2008

I started my cycle at the young age of 11 years old. Soon after my first cycle, I started having very bad pains when I would menstruate. I was unable to move, walk, or do anything. All I wanted to do, was lay down and not move. My parents had me in and out of Emergency rooms, and from Doctor to Doctor, trying to find out what the cause of all this horrific agony was.

My parents were told many different things from all the Doctors. They were told, I had PID, that my appendix needed to be removed, that I had a bad UTI, or bad Yeast infection. Some of the Doctor's even went as far as saying that I was making it all up for attention.

I moved away at 21 years old and got married. The problems continued and even got worse. I continued to see Doctor's and still never had any real answer for my troubles. So with all my frustration I just wanted to feel good and 'normal', so I got on the internet and started searching. I came across this thing called "endometriosis", as I sat there looking at the computer screen, I knew endometriosis was the cause of my problems.

So I went to my Doctor, and told her what I had finally came across, she denied it and said that I didn't have endometriosis because I had never had a baby. She refused to even check me out to see if my thoughts were right. So I left her office in tears, went back to my computer and continued my search.

I then read how it's best to get a Doctor that has dealt with endometriosis before. So I contacted an endometriosis specialist and went in for an appointment. I had been keeping a journal, dating all the times and things that would happen to me, even the things that I didn't know if it was related to all that was happening with me. I handed that to the Doctor, and I was in awe, because he actually sat there and read the journal.

Finally! a Doctor that would listen and care!! I was so excited. He said from reading my journal, he was almost positive that it was endometriosis. He said that the ONLY way it could be diagnosed was through a laparoscopy surgery. So we set that surgery up, and turned out it was endometriosis. Although I'm not 'cured', I feel better having an answer for what caused all these issue's with me.

My Doctor has put me on 100mg clomid to help me get pregnant. My husband and I have been trying now for about 6 months. I pray that it happens soon. And I'm so thankful for the Doctor that I found, he is like a hero to me. He took the time to listen and care. Instead of saying that I was making it all up. 

United States
Dec 2008

My cramps have always bothered me. And I really thought that's how it was for every woman and that I was basically a wimp. When I had my first pap done, she saw something on my cervix then when I was 16. But we did not act upon it. When every consistent cycle would come along, my entire body would go under a great amount of agonising symptoms.

Knees and back would have stiffness and lot of aching to go with it. And my abdominal cramping was making me pass out, throw up, miss time from work so I could crawl into a ball on my bed and cry basically and eventually pass out and try to sleep through the cramps.

Several months ago, I got a really bad UTI that went into my kidneys and I had to keep going to the hospital. They decided to do a CT Scan and an X-Ray to check for kidney stones. The results for the CT Scan noticed that I had cyst. So I had to get several Ultrasounds and another CT Scan to check the cyst and see if they're a major threat or not.

During the 2nd CT Scan, my body was at an awkward angle and they thought something was then wrong with my heart. So ALL OB/GYN work was put to a halt. Went to the cardiologist and found out my heart is in great condition! Go back to my Gyno and let them know that I have medical clearance to get the laparoscopy done. So go and get that done. And they weren't able to do anything. My tubes, ovaries, and uterus were so swelled up that they couldn't touch it. And they cyst were so sensitive that I would "bled like hell" in my Dr's words if he touched them.

My cervix is so narrow, swelled up and has a cyst on there that they couldn't get into my body that way either. Kept me in the hospital for 2 days and then sent me home. And now here I am. Confused. Scared. And very lonely on the topic about this entire situation. Just walking around knowing what's happening in there honestly scares me.

My Dr is putting me on very strong Birth Control pills and keeping me on good pain medicine in hopes that it'll go away or swell down enough to where they can go in and try again. Got 6 wks with no placebo of the Birth Control and I guess I'll have another Ultrasound to see if anything new either developed or shrank. Since no Dr is going to give somebody at 22 a hysterectomy. Cause as of right now, that's my only answer.

Soon, I will be starting a pain clinic type deal I guess. I'm not sure what's going to happen to me. But it's extremely difficult to live this way and it makes the manic depression that I'm already diagnosed with even worse. I'm just trying to find ways to cope living with this, along with PID (Pelvic Inflammatory Disease) and not letting it consume me any more. 

United States
Jan 2009

I don’t know what to do. I was diagnosed with endometriosis 2 years ago. I waited for the surgery for over a year. I had it 2 months ago. I found my right ovary was plastered to my uterus, and had several bad spots of endometriosis on my uterus. I’m being told by the surgeon and gyn that I should have no pain what so ever, but I’m still in just as much as before the surgery! No one is listening to me. I don’t know how to fight this or to be heard. Is there someone out there with any advice? I’m miserable everyday and I don’t want to feel this any more. 

Leigh Black
South Africa
Jan 2009

Just recently found out what it was that I eventually came to term as attacks! Endometriosis -never knew what it was until I had seen 5 Doctors and had an operation. Surgery was the only option and believe me if you don’t have cash in this country you have to go to a government hospital which is what I did-with 7 male doctors discussing me each day for 10 days, I felt like a guinea pig.

I have a 20cm scar to prove my bravery! So anyway I'm a sort of naturalist and they tell me I have to go on HRT or take the pill for three months straight and only get my period 4 times a year-I wasn’t very pleased-did that for 4 months and I was a wreck! I went to a naturopath and he prescribed Progesterone cream. I have been on it for 2 months and I'v had 1 attack-but I’m feeling so much better! I am a bit worried about fertility but I do trust in this stuff-I'm going for a scan in a month. we'll see how well its worked! I recommend it, go see a naturopath and ask them about it, it really could be the answer! 

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