Endometriosis Stories - Page 16

Loren Umenhofer 
United States

I was 28 when diagnosed. Endometriosis symptoms masks themselves so well, I don't know how long I was suffering with it before it got so bad that my Mother found me curled up on the floor of the living room, where I had been for over a half hour unable to speak or move I was in so much agony.

Even then this incident was the "rock bottom" if you will after three months of multiple symptoms which we had caulked up to everything from colds to constipation/gas to lack of sleep and stress, etc. I went to my GP and was seen there by four different doctors.

When they suggested an Ultrasound to try and find out what was, I went to my GYN. She immediately thought Endometriosis and would have know that the symptoms I had had for years (heavy periods, cramping, stomach aches while menstruating, constipation and alike) where in fact symptoms of Endometriosis. But I didn't know.

By the time it was diagnosed my uterus was distended, I hadn't had a full nights sleep in three months, after the Laparoscopy (two Ultrasounds and an MRI later), my insides were so covered with Endometriosis you could barely make out the uterus, ovaries or bowels and it was decided that what had me on the living room floor was one or more chocolate cysts having burst.

That was almost six years ago now, having controlled the Endometriosis with medication (Lupron) and taking the pill consistently (more or less), my symptoms and the growth of the Endometriosis has been minimal. But now as my Husband and I are trying to conceive the symptoms are coming back and they've added a trick or two – infertility and all that comes along with it.

I'm 34 now, had one rough of IVF which didn't take and it’s now thought that I might have Hypdro-Splinx (sp?) fluid in my left tube. I thank all who are bringing Endometriosis to the forefront. I might not have had the chance to have a child or live pain free if it wasn't the case. And the knowledge I now have will help me recognise trouble before my friend or daughter has to suffer.

But I wish I had known sooner. Educating woman on the existence and symptoms so they know what to ask and when, as well as further research into case and effect will help minimise the damage Endometriosis does both physically and mentally. 

Adrienne Smith 
United States

Well, here goes. After reading all the stories on here, I never realized that there were so many women out there that are/were going thru the same things that I am currently. I have felt so alone in this struggle for the past 4 years. Right now I am sitting here, with the weight of the world on my shoulders, trying to decide whether I should have my ovaries removed.

I had a partial hysterectomy in Feb. 2006, and that was supposed to be my miracle cure! Such a cruel joke that was played on me!!! You have to forgive my sarcasm, its about the only thing I have left. I was pain free for about 6 months after, and in Dec. 2006 I was going in for my 6th laparoscopy. I was diagnosed with endometriosis in 2004. I was 24, single, foot loose and fancy free prior to all the problems.

I have always had horrendous periods. My cramps were like labor pains to me, and I have never had a child. When I turned 22, my life went downhill from there. My periods then grew from 5 or 6 days to 3 or 4 weeks at a time, and my clots would be the size of baseballs.

Yes, you read that correctly. I said baseballs, not golfballs. Fortunately I was working for a large health insurance company at that time, and had pretty good benefits, so I could get whatever medical care I needed. And boy did I.

I then became anaemic, due to bleeding for weeks at a time, I was also taking Vicodin for the symptoms, and buying overnight maxi pads and wearing two of them at a time. I have averaged about 2 laparoscopies a year, just so I can be cleaned out, but the cycle never ends. I'm pretty much at my wits end right now, and I truly don't know what else to do.

I wanted to have children. That has been taken away from me. I want to lead a productive life. That is being robbed from me because I am in agony everyday. I'm so tired and the headaches are unbearable. Sleep is interrupted because I wake up suffering.

I have seen so many doctors and gotten second opinions. One doctor before I had my hysterectomy told me that it sounded like IBS and I should get that checked out. I go to the gastro guy, and he tells me that whoever referred me to him was an idiot. I don't have gastro problems. At this point I was bleeding for 12 weeks, I looked like Casper the Friendly Ghosts' little sister because I was so pale, I had no energy, and I was in excruciating pain.

I begged them to take out my uterus. I told them to donate it to science. So here I sit, on December 7th, 2007, still in agony everyday, still taking narcotics and opioids which make me feel like I'm an idiot. Then I read on this site about the woman that had her ovaries taken out and still had problems because she was taking HRT. I don't know what else to do. This has consumed my life and I feel like I'm losing my mind.

I am a professional woman, and I can't see my clients because I don't know which one of my personalities is going come out while I'm there. I've done the Lupron, the birth control pills, the anti depression pill, all to try and get some treatment success, I've gained so much weight from all the meds, which is really bad for me because I had gastric bypass in 2002, where I lost 137 pounds. I have gained 60 of them back due to this mess.

I have tried going off everything to see if I could lose it, but it didn't work. I'm really confused, frustrated, tired, and I just wish I had some answers. 

LeeAnn G 

Ok where to even begin! I started having my period when I was 11 years old. Things went down hill from there. My pain was severe from the beginning. At 16 I was pretty fed up with living life this way, did some research on the internet and found endometriosis. I tried explaining to my doctor, who thought I was nuts by the way, and after 9 months of trying to convince her I needed a laparoscopy, it finally happened.

I was diagnosed at 17 and was told that the extent of my endometriosis was pretty bad and that I would never get pregnant and if i did it would end in miscarriage. When I turned 21 I got pregnant thank god and had my baby successfully. However up until this time every doctor assumed I was just crazy and thought the pain was "all in my head".

After I had my daughter I had some relief for about 3 months and then it came back full force. Life has been hell ever since. I have had doctor after doctor tell me nothing was wrong or try to put me on pill after pill and nothing worked. I am now 24 and am addicted to pain meds and have to double up the doses just to get some relief.

My family doesn't understand, my fiancée doesn't understand, and my job really doesn't understand. This disease has all but ruined my relationship with my fiancée. Sex is extremely painful and I feel like crap all the time. It's hard for people who don't have endometriosis to understand why you are always sick, why you can't be intimate, why you don't even want to get out of bed.

One of my major problems is I have an active 2 year old and I am always laid up because I hurt so bad. It makes my back hurt, basically everything hurts. I know I have depression and I feel like giving up a lot of the time. Every doctor in the last two years has pretty much thought I was a basket case even though I was diagnosed at 17.

I had almost given up when my physician referred me to one last doctor I was reluctant to go hear the same stuff again, but thankfully within talking to me for 5 min he decided to do another surgery on me. I will be having that next month and hopefully I will have some relief. I hadn't had a laparoscopy in 7 years and this new doctor couldn't figure out why no one wanted to do anything for me. Thank god for him!

I just want to say to all of you women living with this disease, one day you will find a doctor who will listen. Don't give up I didn't and hopefully the surgery for me will give some relief. This disease makes every part of someone’s life feel like you are living in hell, and I just want you guys to know you are not alone. Good luck to all of you hopefully someday we will all get some relief. Lots of love 

Bobbi Roeder 
United States

I've been anticipating a time where I could sit down and respond to all of your experiences with endometriosis. What some of you have gone through is quite similar to what I have gone through and continue to go through, and it is extremely difficult to find someone who truly understands me and my struggles on a daily basis.

My name is Bobbi. I am 33 years old, married and have a 3 year old little boy. I have had "female" problems since the age of 12... From irregular periods, to painful, heavy periods, to a scare of cervical cancer, infertility, PCOS, and endometriosis. I was blessed with having my son after seeing a fertility specialist and taking fertility hormones - at that time in my life I was told I just didn't ovulate. I had a high risk pregnancy, but after an emergency c-section, my son was born healthy and that's all I had prayed for.

Once my son had turned one, we decided to try for another baby, however we weren't so fortunate... (However, I was told there might be hope with the help of IVF)... I began having significant cramps - and I describe it as labor contractions in my lower back, and it is as though I am delivering a child vaginally. The symptoms vary in intensity from day to day, but it became debilitating and not to mention I became quite depressed. (I was already depressed due to my infertility issue).

I had been in the emergency room due to heavy bleeding that had gone on for over 3 weeks. The doctor said I was anaemic, to take iron pills and to begin taking agestyn to stop the bleeding. Well, the agestyn didn't help, it may have lessened the bleeding a little, but once the 14 day script was gone, the heavy bleeding began all over again - this went on for 44 days... I was in and out of the E.R., I was going to or calling my family doctor repeatedly (my OBGYN was on a 3 month LOA).

It wasn't until I was at work (I am a nurse) and had nearly passed out in the bathroom, then transported by ambulance to the hospital that I was finally seen by another OBGYN - who immediately said I needed to have surgery... she performed laparoscopy and then told my husband afterwards that my insides were one of the worse she's seen and that she would discuss any chances of pregnancy at my post-op visit in 2 weeks...

I woke up from surgery and my husband was in total dismay because NOTHING had been done due to the severe scarring that effects every organ in my abdominal region... so in the meantime I am in so much pain, bleeding still (although not as heavy) and unable to work or even lift my 3 year old son! I cry all the time and finally my parents had enough of seeing me like this they contacted my doctor and told them I need to be seen. The OBGYN saw me that day and told me there was NOTHING she could do because of the severe scarring - that she suggests a hysterectomy.

I told her I hope to have more children - and she said all she could do then was to manage my symptoms with Narcotics and anti-inflammatory, and if my bleeding becomes heavy to prescribe meds for that... so that is where I am today - I do have an appointment with a specialist out of state to discuss IVF and at that time I will discuss if there is anything that can be done further to ease the pain/bleeding. The appointment isn't until the 3rd week of January and I just hope that I can last that long.

I did contact my family doctor and requested an anti-depressant - because this has been hell for me and I feel so alone without anyone to understand what it's been like. I thank you all for sharing your experience with all of us who suffer from this - it is comforting to know that there are other people out there who can acknowledge your thoughts and feelings - because sometimes I feel as though I'm going out of my mind... Although I would not wish this on anyone - I am grateful to have found your stories! 

Erin Shiel 

Wow! I've read everyone's stories and mine does not even seem to compare. But then again, I don't know what the future holds for me. I was just diagnosed with endometriosis about one month ago. My periods had always been normal. Only lasted 3-5 days and cramps were what I thought to be normal. When I turned 19 however I was constantly having abdominal cramps, nausea, severe gas, constipation. I was at the ER constantly.

Saw a gastro-enterologist for over a year. Was given ultrasounds, upper gi's, catscan, you name it. I was diagnosed with irritable bowel syndrome. I was on so many medications for the pain and to control digestion. I took antacids so much and relied on gas x constantly. When I turned 22 I all of a sudden started getting frequent uti's. I was having constant pelvic problems and developing cysts on my ovaries.

Well now I am 27. I was rushed to the hospital by ambulance in May of this year due to stabbing pains in my right side. After a catscan, I was told I had a cyst on my right ovary that ruptured. After rest for a few days I was fine again. I went to the gyno for my annual check-up in October. I was then put on seasonique, a new birth control that you only get your period 4 times a year.

After a few weeks on the pill I started getting severe pelvic pains. I then discovered a cyst on my left ovary had ruptured. But then the ache still continued after days. So severe I could not go to work. I went to the gyno and had to see an alternate doctor because my own doctor was not there. I was told that it was bowel related and to take some pepto bismol. After 4 days I was in such severe distress I called my doctor and he saw me immediately.

He scheduled a laparoscopy for the following week. It was then he discovered the endometriosis. I was also told my pap smear was abnormal and I needed to have a colonoscopy. After the procedure, I was miserable. I was so constipated and all the gas from the procedure built up inside me and I could not release any of it. I felt like I was in labor for 2 days until days of laxatives and enemas to finally help me go.

Then, I had to return to the doctor who performed the colonoscopy. My results came back saying that I had inflammation in my cervix. I need to go for paps twice yearly now. I was told that the birth control would help to eliminate my symptoms of endometriosis and to take it consistently to entirely suppress my period. I was told that it would take 6-8 weeks for my body to heal from the procedure.

My doctor supposedly put dye on my tubes to help eliminate the symptoms. I was told I would not know if it worked or not until I was healed from the surgery. I still have bad symptoms which vary from day to day. Have been in constant intestinal distress. Does not matter what I eat or do not eat. I have gas, abdominal and pelvic pain, bloating, cramps & back ache. Not to mention I am irritable as can be and fly off the handle at everybody.

Now all of a sudden I have been bleeding for 11 days straight now. Some days very light and others heavy where I need to use tampons and pads. This is causing extreme cramps, irritability and gas. The seasonique packet says that abnormal bleeding can be expected within the first few months. But for this long? I have been on every website and even got the book endometriosis for dummies.

I've tried to eliminate things from my diet. I am so emotional, I have no energy and all I want to do is lie in bed with my heating pad. I lost my job because I was out of work so long. I break down crying constantly and it's affecting my entire well being, my relationship with my boyfriend, my parents and my friends. I need some advice.

I want to have kids some day desperately. My doctor told me he would suppress me on birth control until I decided to get pregnant and that would eliminate symptoms until after the baby is born. 

Stories Page 17