Endometriosis Stories - Page 19

Name: Freya
Email: freya@justice.com
Location: United Kingdom
Date: June 2008

Perhaps the first contributor from the United Kingdom? (Its a "grin and bear it" country!). I've read back through the letters and everyone has the same symptoms, a battle getting it diagnosed and the word that recurs again and again is PAIN. This makes me want to cry because I have no answers for you (as an endo sufferer I wish there were). HOWEVER I can think of 3 forms of solace - it isn't terminal! (It won't kill you!). Second- if you can't (like me) have children try adoption and fostering if you can talk your husband into it or go it alone - imagine the massive rewards! Third - yes the pain makes us stronger and the good days more highly appreciated!!! Lots of love xx


Name: Sara Olson
Email: sara_olson_@hotmail.com
Location: United States
Date: June 2008

Hello my name is Sara I’m 16.. I found I had Endometriosis just a few months ago...I did really think any thing bad of it other then the fact the pain was really bad.. But now that I found out that I can’t have kids it really kicked in. You don’t realize how much you want something until you can’t have it anymore. I have been dealing with it but I’m not sure I would just like to talk to some one who is going threw the same thing is I am.


Name: Samantha
Email: sbealmear@ivytech.edu
Location: United States
Date: June 2008

Hi! I am 22 years old and have been suffering from endometriosis for approximately three years. Within the three years I have had two incision operations and one laparoscopic. The first surgery (an incision) I had seemed to do the trick and I was very hopeful that was a permanent fix. However, not quite a year later it was back with vengeance. My doctor then decided to do laparoscopic surgery because he was sure that that it couldn't have came back that bad so soon. This was in May of 07, then in October (four months later) my pains were worse than they ever had been. Reluctant to believe the endometriosis was back again, I was to see a G.I. doctor and an orthopedic doctor. However, not surprisingly, everything with those doctors checked out to be healthy. By this time (January) I was not able to work, the numbness in my right leg was keeping me from being able to even drive to my appointments. So by this time my husband had exhausted the amount of days he could take off so my mom took me. Just FYI this is the doctor that my mom had deliver me and my siblings. Needless to say, he seemed to listen to her better. She was more blunt about it and said something needed to be done. Finally he agreed to take me to surgery yet again to see. What he found was that my uterus had attached itself with endometriosis to my sciatic nerve. Hence, the pain in my leg. After the surgery he told me that if we wanted kids then now would be the time to do it. And he also gave me another lupron shot (same as he did at the start of everything in october) just in case. Now almost five months later I have yet to start my period again (the shot was a three month) and pains are back in my back and pelvic area. I called the office the other day and they said it was nothing to worry about and that my body is trying to come off that shot. But is that normal? It doesn't seem right to me. Maybe I'm paranoid. The doctor I go to says that he won't open me up again to clean it out without taking everything. I'm only 22, I want a family, I'm not emotionally ready for that! If anyone has suggestions please email me!


Name: Michelle Morris
Email: michelleamorris1@gmail.com
Location: United Kingdom
Date: July 2008

Hi! So glad I came across this site, it's made me realise I'm not as alone as I thought I was! I will try to make this as short as I can. I'm nineteen years old (turned nineteen this month!). My periods started when I was 12, and for as long as I can remember, they have been painful and heavy. At first, I accepted it must be normal, especially as I, at that age, knew no different. But as time went on, it got worse and worse to the point that I had no choice but to stay off school sometimes. My periods were so heavy, that I often wore more than one sanitary towel, and changed ont he hour, sometimes even twice, or three times (during one hour!) I became very anemic and was put on iron tablets; I became tired, irritable and just very down and out. However, those symptoms were the least of my problems as the pain was so bad, it made the bleeding seem so much more of a minor problem. I would lay in bed in pain, just crying for hours. Tried endless amount of painkillers and anti-inflamitories. Nothing worked. I visited the doctors more times than I can remember to only be told it was normal to be in such pain, and was given some kind of new drug each time or a drug increase on what I was already taking. One drug, ponstan, I noticed had a tiny effect on minimising the symptoms, but it only lasted around three months. After that, it stopped working and no other drug has worked since. During the last two years the pain has at least doubled and the bleeding also and it's often come to the point I just want to sleep through my whole period and not wake! Last April I was diagnosed with Epilepsy, and therefore had to come off any kind of drug I had been trying to take. The last six months have been horrid, a complete living nightmare (as I'm sure many of you can relate to) The never knowing when the pain will start is horrible... it hits you from out of nowhere. You can be fine one moment and then in an utter state of pain the next. It comes on so fast that it's sometimes almost impossible to prepare for it. My choices in drug treatment are limited and my options left are extreme (hysterectomy). I roll on the floor in agony, screaming in pain and doctors have been so little in means of help, it's been a waiting game. During my actual cycle, I scream about how I want the hysterectomy SO bad, at times I've even said I'd rip my own stomach out to just stop the pain! Then when I get that one to two weeks where the pain is so much less... I cry because I think I can cope without the hysterectomy, and promise myself I will get through the next period ok.. it just never happens. I now cough blood, faint and can't cope during my periods anymore, that earlier this month, if I had, had the chance.. I don't know what I would have done (and I am the least suicidal person on the planet) The pain has genuinely got this far. If anyone, ANYONE at all can offer some kind of advice, PLEASE email me. Thank you so much for letting me share my story, Chelle x


Name: Shelley Bishop
Email: slbishoptc@live.com
Location: United States
Date: July 2008

I had my last child in 2005 and had my tubes tied. I had some lower stomach pain where I could not walk. so i would lay down and the pain went away. there were times I would never hurt. I remember complaining about it once to my dr. He thought maybe it is just scar tissue from the c section. Then at the end of last year My periods would be off and late or nothing at all. I ended up having stomach pain and my husband says lets get this checked out. I went to my regular doctor and he had me go for an ultra sound in April and it came back abnormal possible fibroids. My regular doctor did not like the word possible. So I went to a new gynecologist and told him my symptoms and the abnormal ultra sound. so then in may I went for another ultra sound and this time they could not find anything .I was getting frustrated so on June 27th of this year I had a laparoscopy done and before I had surgery my husband was on the internet trying to figure it out he kept coming up with endometriosis. I was still convinced it would be fibroids. And before i had surgery I told the doctor to take what ever he has to out so I signed for one ovary to be taken out. So come to find out of on the 27th my husband was right. It was endometriosis. My doctor did not take any thing out because he did not want to throw me in to menopause overnight. I just went in to my appointment and I just started my shot called lupron and since Sunday my hormone norethin. So far I feel good but still really tired. I was told if it dose not work then he will take every thing out which I told him I did not care because I was done having kids I will know in December if it works. I am 32 with three kids one is a boy who has downs and autism he is 9 years old I have 6 year old girl and a 3year old girl also I work part time at yokes in west Richland Washington and I am also going to school to get a certificate in child care. And I almost been married 11 years. On the 26 th of july. I forgot to let you know I am a courtesy clerk at my job. I'm trying to see if I should quit my job and take of me and focus on the kids. I also have a learning disability so I am on ssi . So I know have other money coming in .I will be out of work for 4 weeks to recover. I also will be having carpel tunnel surgery done in a few weeks on my right hand that's all I have to say.


Name: Mary Henry
Email: phscale@mail.com
Date: July 2008

i have just being diagnosed with endometriosis today my story is that for the last five years i have being diagnosed from alternate therapists that i have candida albicans and i am sure that this was the fist start of what i have now , and the diets i am reading about for this disease is practically the same as the anti candida diet i think when doctors cannot accept candida and it is not eradicated through diet this fungus takes over the body and this is where all illness begins .


Name: Nicole Miller
Email: naj302003@yahoo.ca
Location: Canada
Date: July 2008

Well I will make the story short and sweet because we all know what Endometriosis is and what happens. I am 36 years old. I am married and have had 3 children .. all born by caesarean section. I was diagnosed when I was 26. I have had 3 surgeries thus far and the fourth is scheduled for aug. 21. I have lost one ovary. I had a cyst the size of a small watermelon removed from left ovary (which also took the ovary) and also a non-cancerous tumor removed from right ovary. I was diagnosed with mild endo. I have had a growth (mass) removed from my bladder aprox 6 years ago. My surgery scheduled for aug 21 will be to remove another mass from my bladder once again but this time the mass is in between the bladder and the stomach. I have opted for a hysterectomy since my tubes were already tied but the gynecologist does not want me to go through that at this point due to my age and the symptoms that can go along with that. Bottom line, This disease is a little monster. Regardless of the medicine you may try or the prescribed / natural remedies you experiment with -- the disease will persist. If one insists on trying a natural remedy .. they are playing with fire as Endometriosis can grow rapidly and can spread onto organs such as bowels, bladder, uterus, stomach and also has been found on lungs. Do not ignore the disease or play into the mind-over matter theory. The disease can rapidly or slowly turn into cancer if not treated properly by removal. It may have to be removed more than once as in my case. I realize that after my fourth surgery I may not be finished with Endo and I will continue to go for regular checkups and if necessary I will keep having it removed as many times necessary. good luck to everyone else out there !


Name: Desirae
Email: Dezre87@aol.com
Location: United States
Date: July 2008

Hello! Did any of you have an internal ultrasound before laparoscopy?...if so, did they find anything? Did you ever feel like what you were experiencing wasn’t justified? What all did you experience? I met the doc yesterday and we talked about the symptoms and he did an internal ultrasound. He said it was normal. It didn’t seem like he thinks it is endometriosis and he thinks a lot of the problem is psychological. Maybe the excruciating sex is partly psychological because once it hurts really bad a few times, of course you’re going to tense up and dread being in pain, which would make it worse. But I don’t think something psychological would explain the GI issues (which I’ve had 2 colonoscopies for and haven’t found anything), the fatigue, headaches, lower back pain, and bleeding really heavy for like 2 wks when I’m not on birth control. The birth control does help w/ my periods but I still have all of those other symptoms and the pain during intercourse is awful (pretty much crying and/or grimacing in pain every time). I just keep feeling like everything I am going through isn’t justified from the tests they do and the doctor not thinking that is what it is. He said he would do the laparoscopy if I want so I am scheduled to have it done soon. Finding something is scary enough in itself, but I have this huge fear that everything I am going through is not going to be justified and then I’m going to feel like it’s all in my head, which is what everyone seems to think. Either way, I’m getting it done in a little over 3 wks so we will see!


Name: Dina Pettit
Email: DPettit5@cfl.rr.com
Location: United States
Date: July 2008

I was just diagnosed with Endo June 2008 when I had lapo. I am 22. I got my period when I was 13. Since then I have never been "regular" and I've been on probably 5 different BC pills. The first time I had the excruciating pain I was 16 and asked to leave class to go to the restroom. I immediately fell on the floor in the bathroom in horrible pain and started crying. I called my parents to take me to the ER. I have been to the ER many times since then because the pain was so bad that my parents didn't know what else to do. I was on the floor crying. Of course every time that I went to the ER they said "unexplainable abdominal pain" Like that was supposed to make me feel better. I went to many gastros, gyn's, and other specialists. I had upper GI's lower GI's a colonoscopy when I was 16 CT's MRI's everything you could think of. Most of them thought I just had IBS. I didn't have ANY of those symptoms. I've had lower back pain ever since I can remember and my parents always thought it was ridiculous that I was in pain all the time and that I was exaggerating. No one understood how I felt. When I came to school in Orlando I found a new GYN that my sister-in-law suggested. She was great at first. She seemed enthusiastic about trying to help me figure out what this pain was from. She scheduled me to have a trans-vaginal ultra sound. That was THE MOST PAINFUL thing in my entire life. Of course it found NOTHING. Then she gave up, but she assured me I def did NOT have endo! Then the next time I went to the ER they did another trans-vaginal ultra sound! ABSOLUTELY RIDICULOUS! I insisted I had just had one but they wanted to do it anyways. Finally I went to a new gastro and he thought I had a hernia and suggested a General Surgeon. And that's when I finally had the lapo and she found endometriosis. So I searched for a new GYN to help me because my old one insisted I didn't have endo so I wasn't going back to her. So I found one that was apparently supposed to be the BEST! He really is! I love him and I've never had a male GYN so I was surprised. But, he suggested the Lupron. He's 100% behind it and said that if I was his daughter he'd put me on it. But now I read all of these horror stories and I'm concerned. Any suggestions??

Name: Sandra Gonzalez
Email: mufassa_76@yahoo.es
Location: Canada
Date: July 2008

Hace 4 anos comence a tener menstruaciones de color diferente y molestias al tener relaciones sexuales. Trataba de salir embarazada y cada vez sufria una desepcion peor. Finalmente empece a tratarme y descubrieron mediante una laparoscopia de contraste uq etenia Endometriosis grado 3. estuve bajo tratamiento por 6 meses con un medicamento llamado Zoladex. Me repeti la prueba y mi especialista dijo que estaba mucho mejor pero no curada. Aun no he salido embarazada y hace casi un ano de esto. Entiendo que la enfermedades reversible y temo mucho no poder tener hijos. Mis periodos son exactos y no siento dolor,sin embargo me asusta cada dia mas pues ya tengo 32 anos y siempre quise tener dos hijos. Gracias por escucharme.


Name: Kate Meadows
Email: witchiepo@windowslive.com
Location: New Zealand
Date: Aug 2008

hi there i am ready to tell my story. i started having my periods at age 11 from the very start my periods were very painful. I would go to my GP every month and complain about the pain. Her reply would be the same every damn month "its normal for women to have painful periods". The pains got worse when i was in my teens and still going to my gp every month and still getting told the same thing. I got to a stage where i would have 1 good week out of the month (witch truly sucked being a teenager). When i became sexually active at 17yrs old sex was painful, i was always in a lot of pain. my boyfriends never understood and all of them cheated on me because i was not able to have sex so they took it upon themselves to go elsewhere. This didn’t do much for my self confidence. i felt like a freak for a long long time. my friends couldn’t understand why i couldn’t go out and do the things they did. Finally at 25yrs old my mum had had enough and sent me to a Gyno for my 25th birthday present (what a gift ahe). It was my first ever visit to a gyno i was so scared. He did an internal, and told me i had endo i had never heard of it before i had to sit down and take it all in thru my tears. i had my first op a year later and i was riddled. ( i was so mad at my GP for doing nothing about it). The guy i was with at the time of the first op was horrible as i needed help getting to the loo, getting on the loo and off it. he left me there for over 20mins it was so degrading i hated him and i hated me for not being able to do anything for myself. Last year 2007 i got married to a truly wonderful man. In the time we have been married i have to other ops within eight months. the first one in aug last year they inserted a merina against my wishes, for the next 8 months it was total hell. i could feel the merina every time i moved it hurt so much the tears would flow freely. i had a total of 4 false labours because of the merina. i have since found out that a merina should not be used in women who have not had children because it is likely to cause false labours.(that’s right i don’t have any children). My second op in march of this year i asked for the Merina to be taken out (which they did) i was told that i had a cyst on my right ovary witch had attached itself to my tube and lining (no wonder i was in so much pain), they removed my left ovary and tube. I thought this would be enough but no. I am worse now than before the ops. when i met my husband i was 56 kgs today i am down to 39 kgs, i have been screaming out for help for the last 6 months but no-one seems to hear me or care. My husband is so scared that he will lose me to this dreaded disease. I am freaking out coz i don’t want to die!!! i am scary skinny no clothes fit me any more i live in track pants all the time. I went to my gyno 3 months ago and he informed me then that i also had adenomyosis as well. so much for getting better. i eat heaps but no weight is going on i don’t no what to do next. i have had this disease now for 22years. I cant work coz the pain is so unbearable. i have chronic lower back pain, sometimes i cant even walk i feel like I’m 190 instead of 33. i have to take 2 60ml codeines before i get in the car to go any where. this is so not the life i wanted. i wish some one would find a cure or at the very least find something to ease the every days pains that i deal with. if you have any ideas please feel free to email me it would be greatly appreciated. i am looking into a mal-practice suit against the hospital for putting the Merina in against my consent. Wish me luck. Thanks for taking the time to read my story.



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