Endometriosis Stories - Page 19

United Kingdom

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 endometriosis 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 

Sara Olson 
United States
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 painful periods were really bad.. But now that I found out that I can’t have kids it really kicked in. You don’t realise how much you want something until you can’t have it any more. I have been dealing with it but I’m not sure I would just like to talk to some one who is going through the same thing is I am. 

United States

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 it couldn't have came back 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 orthopaedic 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 pains 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! 

Michelle Morris 
United Kingdom

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. 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 on the hour, sometimes even twice, or three times (during one hour!). I became very anaemic 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, just crying for hours. Tried endless amount of painkillers and anti-inflammatory drugs. Nothing worked.

I visited the doctors more times than I can remember to only be told it was normal to be in such agony, 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 painful episodes have 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 agony will start is horrible... it hits you from out of nowhere. You can be fine one moment and then in an utter state of distress 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 agony 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 any more, 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. 

Shelley Bishop 
United States

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 gynaecologist 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 my husband was right. It was endometriosis. My doctor did not take any thing out because he did not want to throw me into 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 does 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 3 year old girl also. I work part time and I am also going to school to get a certificate in child care. And I have been married 11 years. On the 26 th of july. I'm trying to see if I should quit my job and take of myself and focus on the kids. I also have a learning disability so I am on ssi. 

Mary Henry 
July 2018

I have just been 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. 

Nicole Miller 

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 tumour removed from right ovary. I was diagnosed with mild endometriosis.

I have had a growth (mass) removed from my bladder approx 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 gynaecologist 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. 

United States

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 did you experience?

I met the doctor 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 agony 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! 

Dina Pettit 
United States

I was just diagnosed with Endometriosis June 2008 when I had laparoscopy. 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 painful episode, I was 16 and asked to leave class to go to the restroom. I immediately fell on the floor in the bathroom in agony 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 ache 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.

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 definitely did NOT have endometriosis!

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 laparoscopy and she found endometriosis. So I searched for a new GYN to help me because my old one insisted I didn't have endometriosis, 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?? 

Stories Page 20