Endometriosis Stories - Page 30

Name: Taryn Mcgaughey
Email: queenblue24@hotmail.com
Location: United States
Date: Feb 2010

I am now 27, I have had endo since i was 14 and my first surgery was when i was 15. On Valentines Day to be exact! I have undergone 3 laps, a year of the depo shot(15 yrs old) and numerous bc pills and painkillers. I was told then that it was all over by 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 deff helped! I didn’t listen though about the progesterone pills i didn’t think he knew what he was talking about simply bc he was still studying it. In 2007 when i met my husband we thought i was pregnant bc 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 mon ago, and was told this would help. While prego they had to induce me bc 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 prego (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 ive 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 bc i was filling out an app for help with my surgery (another lap). So i called there now there telling me basically i would have to go to a specialist but still have the lap...I’m really confused. Now No one will call me back, all i want to do is sleep bc of the headaches, nausea, and I’m just tired all day long. Run down etc. I feel horrible. And to be honest this is how I’ve felt past times before the only difference is the knot. So maybe I’ve had it the entire time. I have not had weight gain or loss ever till about 2 weeks ago i gained 7 pounds in a week. And now dropped 2 of those pounds. My husband says i eat like I’m pregnant. not that its all the time, just a lot at once. I’m not very big 127 now. There’s no possible way I’m pregnant, and 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 there 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. I live in a small town and travel to a dr. an hour away. The dr who did my other surgeries retired so i went to the dr. 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 pain 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 pain 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 endo. as well. Anyone with any help please contact me queenblue24@hotmail.com also any stories close to this or with more knowledge feel free to email as well, its good to know your not the only one with these problems. Sorry if the story is chopped up its a lot of info to try and put together. Thank you and God bless. 2/9/10


Name: Jenna Mae
Email: Blamakaraokehstess33@aol.com
Location: United States
Date: Feb 2010

Wow, where to start. I was diagnosed with Endo in 1997. Suspected Endo since I was 13. I'm now 34. I started out only suffering with pain related to my period and it has progressed with time. I'm now feeling pain on a daily basis. My current medical regimen is pain medication. I was lucky, the first GYN I went to diagnosed me with Endo 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 lap 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 block in my left tube but that block 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 Endo 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.

Name: Joy
Email: honeydewfavorite@gmail.com
Location: United States
Date: Feb 2010

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 pain is 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. The pain has increased 10 fold over the last 3 months. Is there anything I can do?

Name: Gabby
Email: gbrl_gomez@yahoo.com
Location: United States
Date: Feb 2010

Hey everyone! I'm 26 and I was diagnosed with endo 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 pain 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 craps 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 craps all the time and the pain shoots down my legs. Help! I just need to know if this normal my gyno just keeps giving pain meds.


Name: Katherynn Stewart
Email: kattyvonne7@yahoo.com
Location: United States
Date: Feb 2010

I started my period at the age of ten. The first period I had there was no pain at all. The next period came and I was in terrible pain. My parents and doctors thought I was faking it until my thirteenth birthday part when I was in so much pain I couldn't eat. The doctors couldn't find anything wrong but decided to give me a laparoscopy anyway. I was diagnosed with level 4 endometriosis. The pain was unbearable and I was in and out of hospitals all the time. I started smoking pot to ease the pain, which it did, but I still couldn't live a normal life. I had also been told I could never get pregnant. At the age of 17 I went to an endo. specialist and she said my uterus was trying to heal itself and I could get pregnant. At the age of nineteen my husband and I decided to try to have a baby and I was put on Yaz, a birth control. Two weeks later I died from a blood clot that traveled through my pelvis into my lung where it exploded and filled my lungs with water and stopped my heart. I was in a comma and funeral arrangements were made for me b/c I was expected to make it. But I did. The month after my death, for the first time since I was 10 my period started to become regular. I am 22 now and have gotten my G.E.D and I start school this fall. But sadly, my periods are getting shorter and the pain is increasing to how it used to be. I was told to have a hysterectomy but I am still young and want to have a child in my womb. I have high hopes that I can find help and support here but I am also depressed because I've been told for so many years that I will never live a normal life. I can say that yoga at night before bed and in the morning and eating sweet potatoes and fish have helped a lot too. I don't know if it will help everyone but I know it helped me. I also feel discouraged because I don't know of anyone as young as I am to have it and therefore don't know what my chances are. I also no longer have 1 of my ovaries b/c when I was 13 they said it was about to explode and if I had come in an hour later I probably would have died. I have lots of questions and I hope your site can help I also hope some one like me reads this and I can know I'm not the only kid that got it. I pray that any of you who may have thought about suicide b/c the pain was too grate, that you know now after finding this site, you are not alone. It's a good feeling.


Name: Smith
Email: stripathy2003@yahoo.com
Location: India
Date: Feb 2010

Hi, I am a married lady since 2009feb.My age is 27.I was diagnosed with endo III on 2006 and got operated on Oct 2006 itself by laparoscopy .Doctors suggested me to get marry and have baby asap but due to some unavoidable circumstances I couldn’t. After my marriage on 2009 my husband was not ready to have baby so early so I don’t know what to do now. Is it possible to get pregnant with this history? I need a baby desperately. Thanks


Name: Jessica Dunn
Email: jessicadunn84@hotmail.com
Location: Australia
Date: Feb 2010

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 hole thing that kind of got my worried but then they said the will give me a needle once a month for 6 months to under 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.


Name: Judi Leigh Taylor
Email: tayjuju@aol.com
Location: United States
Date: Feb 2010

I was first diagnosed with "endo" 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 pain 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 "endo" 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 was not too intense. It slowly got worse as each month went by. It now feels sharp, burning, stinging. I now have pain that goes through my legs and back. I know 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.


Name: Kim Jackson
Email: jackson580@bellsouth.net
Location: United States
Date: March 2010

My name is Kim Jackson. I am 38 years old and I had...keyword had endometriosis. A few years ago I went to my gynecologist 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 pain) Two years later when I couldn’t get out of my bed due to the pain in my right side I found another gynaecologist and told him my problem. I had a cist on my right ovary and the tube was "corroded" and possible tumors 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 pain 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 pain. 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 pain was on my right side not my left side. He said that was "referred pain". So one week before my surgery the pain 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 cist 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 endo when he did my hysterectomy. So surgery was cancelled because he said he couldn’t help me. So I went to a general dr 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 cist, cist in the left ovary, cist 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, endo hurts!! 3. Just because you have had a partial hysterectomy doesn’t mean you are done with endo. Don't live in pain, don’t allow a doctor to make you feel stupid, find someone that will help you. Today I am endo 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 endo, Kim Jackson


Name: Judi Morabito
Email: tayjuju@aol.com
Location: United States
Date: March 2010

I was first diagnosed with "endo" when I was 28 years old. I am now 48. Throughout the years I have suffered from many different symptoms. Painful periods, infertile, moodiness. But only later have I been experiencing pain 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, pain in my ovaries and lower abdomen. At this time I am without out 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 pain. I was "relieved" that I was not diagnosed with something more "serious. Still, the pain continued and gets worse and worse everyday. I now have pain in my back and legs. 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. I don't know what is wrong with these doctors. To be told that "pain is in your head" is absolutely ridiculous. Shooting, stabbing, burning pain should be taken seriously. It is not normal. Especially when you are not on your period. My pain has affected my daily life as it has as of yours. My relationships and work life are suffering. I thank all of you for sharing your stories. I am trying to take my health in to my own hands and even without medical insurance will do everything that I can to find some kind of answer.


Name: Dori-Ann
Email: ddelatizky_mvus@yahoo.com
Location: United States
Date: March 2010

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!



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