Lisa Kowalis April 2007
Severe weight gain
I'm 32 years old and was recently diagnosed with endometriosis March 2007. I had been ill for three years, the same symptoms pelvic and back pain. I went to my regular physician who had me go to every doctor ending in ologist. Nobody could help and even when I went to my OBGYN he would say I was overweight, needed to exercise, needed to buy a better bra. The fact was I had never weighed over 145 and I now was 215.
I did exercise, I worked in a nursing home and was on my feet all day, I'm very active and have two girls 10 and 14. I was getting sicker, I would throw up, sometimes not eat at all because my stomach always hurt, but every doctor said you can't be not putting food in and gaining weight. I ate less now than ever but continued gaining. Then I began with discharge from my breasts, they sent me to a doctor and nothing, all in my head, it could be the hot showers stimulating it or sex.
I was only concerned because my grandma has breast cancer but nothing turned up. Everyone around me was beginning to think she’s crazy, they all have periods just get over it, if doctors couldn't find it, nothings wrong so I quit going to the doctor. But in April 2006 I found out I was pregnant and in July 06 I miscarried. I then began with a horrible cold I couldn't get rid of and in Oct.06 I still had this cold so I went back to the doctor nothing. Again I was feeling worse, my back pain was keeping me from getting out of bed and my periods were keeping me from work, family everyday life.
I had fever, night sweats, vomiting. But nobody knew why. I was beginning to think |I was crazy, we even thought it's our house, maybe mould, nope. Maybe I over do it, so I started doing less, maybe it's our mattress, bought a new one, new bras, diets, exercise, yoga, nothing worked. I maintained 215 this entire time never losing or gaining.
Then I went back to the doctor. I couldn't get out of bed my back symptoms were so severe, he said I should see this gastro doctor, I'd seen him before like all the others he believed it was female related and I was sure he still would, but he said we need to do a colonoscopy and endoscope. That was on a Monday, everything looked good with my colon, great but he wanted to send on stuff to the OBGYN.
I get the call that we need to come in and we do I'm being told I have to have surgery now to go in for possible staging of ovarian cancer, What??? This is on a Thursday, and I'm being told this by the same person who I've gone to for 11 years, delivered my child, but when I've come in for three years with the same complaint, I was told exercise, better bra, tilted uterus, no big deal it's all normal.
That following Monday they did a partial hysterectomy (RIGHT OVARY AND TUBE). I thankfully didn't have cancer, it was Endometriosis. It was so severe he had to scrap it off other organs. I had a chocolate cysts the size of a grapefruit on my right ovary, he had to call another doctor in to assist because it had embedded itself and he could not remove it alone. He wanted to remove everything but my spouse didn't allow it.
I will say when I awoke I was thankful no cancer but I was more thankful that right away NO Back Pain. All this time I was made to feel crazy and I had this little voice inside that kept telling me, no something’s wrong, but eventually I started to believe it. Now I'm just trying to deal with all of it one day at a time.
Warning against Lupron
I didn't ever think I would have to look at another endometriosis site again but I am here because it's back! I am 29yrs. old and I was told I had endometriosis when I was 18, and since then I have had 5 laparoscopy surgeries and a part hysterectomy leaving my ovaries for my 24th Birthday.
I have been on Lupron- don't ever take it, I don't care what your doctor says, and it does stop periods, but I have gained over 60lbs. that I can't get off for 5yrs. now and that is exercising 2hrs. 5 days a week. I knew a District Manager for a drug rep co. and she herself as a sufferer had said that Lupron has some of the nasty things in it and is a very bad drug. Coming from a drug rep.! I have been on Depo and nothing has helped.
I too take pain meds to make it through most of my days but I hate the way it makes me feel and some don't even work any more. I had thought everything was fine but within the last month I am feeling that same old symptoms again. I had to stop going to school because of the surgeries and had to work full time just to afford insurance to pay for all of my surgeries.
I just started going back to school and have one more semester left, all I want to do is finish school before I am 30. I have made an appointment today to see my Dr. to see if we can take out the ovaries. I am in a relationship and my boyfriend of 3yrs. would love to have a child but he knows my situation and the costs of having someone carry a child for us, plus all the extraction and freezing fees would leave us with no home!
I understand everyones pain and ask that everyone stick together because even though we are all in pain this is the only therapy-talk therapy that is of any comfort. So please do not take Lupron, Depo maybe, and for God sake no inhalers, I have been there too and had a reaction so bad it blistered my face! Good Luck to everyone and think of the the ocean.....it's where we'd all rather be! ~Katie
Improved after radical surgery
I have been suffering with my periods etc from the age of 13. In the last 5 years I have had 3 laparoscopies as a day case at my local hospital. Endometriosis has been found each time and lasered off but recurred. I then went to see an Endometriosis Specialist, Mr A Trehan who practices at Dewsbury & District Hospital, West Yorkshire. He is one of the best Endometriosis Specialists in the country and speaks at conferences all around the world about endometriosis and its affects.
After consulting with Mr Trehan I was told "lasering" the endometriosis was basically a waste of time because it will just grow back again. After a long discussion I was placed on the waiting list for Radical Excision of Endometriosis. I had this operation in February of this year. It is a major operation and can last up to 8 hours. The endometriosis is not lasered off but cut out so it won't return again.
After surgery Mr Trehan told me they had cut all the lining of my womb away because it was affected with endometriosis, some scaring also had to be cut away (that's where it was lasered off when I had previous laparoscopies). Cysts where also found on my ovaries and these were drilled. I know PCOS is an affect of endometriosis and this is what was with me. I had all the symptoms post op, weight gain, tiredness, stomach pain and infertility.
I am now 3 month post op and I am so glad I had the operation. I was wary at first because Radical Excision of Endometriosis is a major operation and they have to cut close to other vital areas. Puffiness and weight dropped off me straight away, I no longer feel tired and my periods are now regular with virtually no pain. Before this operation I feel I have been passed around from Doctor to Doctor and had procedures and operations that haven't helped or been needed.
I now feel so much better and the next step is trying for children which I have been told should be no problem because of the operation. Before the operation I felt like no-one would listen but I just want people to know there is a light at the end of the tunnel.
Endometriosis is a medical problem that affects so many different areas of the body, not just the reproductive system. Diets also help and I recommend Black Cohosh tablets (you can pick these up from any herbalist, Holland and Barratt etc). After my operation I noticed that my skin and hair were much better, I wasn't passing urine as much, my skin wasn't dry (on feet etc) and silly things like my eyes were whiter and nails were tougher. It really is unbelievable what this condition can do to you, hopefully my story could help a few of you out there. thanks.
Stage 3 endometriosis diagnosed
This story is actually about my 16 Year old daughter Allison. She has been in extreme agony and horrible bleeding for over 3 years. She started her periods when she was 13 and about six months into them she started having what we figured were just ovarian cysts. I took her to see her Dr. and he ended up finding Poly-Cystic ovaries...so at that point we started treatment for that.
Allison just kept having problems. She has never stopped with all the pain and clotting. Every month it just seems to get worse. I finally got her into see a specialist in Dallas, Tx. We tried different kinds of birth control, all kinds of tests. She finally decided maybe we needed to go in and do surgery to look around and see if there was something else going on.
Well, she went in thinking surgery would take about 1 hour. 4 hours later I find out that my 16 year old daughter has Endometriosis. She is at about a stage 3 in severity. They tell me that the Derpo-Lupron shot is her best treatment to start after the surgery. I am having a terrible time getting my health insurance to approve these shots. They say that they do not think it is medically necessary. My daughter has been in so much distress for so long and has missed so much school.
Severe weight gain due to drug treatment
I was 15 years old and went to my pediatrician because I was having this awful aching before and during my periods. He asked me a few questions and said "It sounds like Endometriosis." To my mother and I this was a foreign language! So he referred me to a GYN who specializes in pelvic pain. After TWO YEARS of "Let's try this." and "Let's try that.", and getting to the point where I missed at least one day of school a month, I had a laparoscopy and was diagnosed with Endometriosis on September 24, 2004 at the age of 17.
I also had a procedure done called LUNA - Laparoscopic Uterosacral Nerve Ablation - it simply involves cutting the nerves to help keep you from feeling the pain. A few months later I went back to my doctor and told him I was having symptoms again. He did an exam, internal and external, and said he couldn't feel a difference, so he wasn't going to do anything. About a year and a half after my initial surgery, in April 2006, I was in such agony for over a week that I called my GYN for an emergency visit.
It was at this visit he decided he wanted me to try a 6 month course of Lupron (Lupron Depot). This makes you go through a psuedo-menopause. MENOPAUSE AT 19 YEARS OLD!! But I was in so much pain - I agreed. First the hot flashes - I was MISERABLE. And I was moody - It almost ruined my 3 year relationship. And it made me gain weight. I gained roughly 60lbs in that 6 months. For a 19-year-old who has always been the "Skinny-Minny" of her family - can you imagine what gaining 60lbs. has been like?
Even after all that - the Lupron treatment didn't help. After the last shot I went back to him a month later and told him I was still in pain. So I had a second laparoscopy to see if it was really the Endometriosis that was back because my doctor throughout this whole ordeal insists that I should see a GI doctor because he thinks it's intestinal - even though I had NO GI SYMPTOMS!
Also throughout all of this - I was on Naproxen first, which stopped working - and after multiple complaints and calls to his office my doctor finally called in a prescription for Tramadol for me. Unfortunately - that doesn't work either. And he won't give me anything else. He won't give me narcotics because he is afraid I become addicted. I spend a good amount of time wishing I could just give up - have a hysterectomy. How many 20-year-olds do you know who WISH FOR a hysterectomy. I don't know any.
My doctor just says "You're not there yet." How can all these MALE doctors know what's best for me? They don't know how I feel - they never will. I spend the rest of the time wondering with all the problems I'm having if I'll ever be able to have kids anyway. For someone who loves kids as much as I do - that's a hard reality. I get so frustrated.
And my poor fiancé (yes the same 3 year relationship I mentioned before! 4 years now.) has to deal with it all - we go out and have to go home early because I'm in so much pain I can't stand up any more. As I type this I am in so much pain I wish I could leave work and go to bed, but as I am in a new job and am not allowed paid time off yet - I get to sit here and pretend to be happy.
The average age of diagnosis for Endometriosis is 27. I'm not even 20 for another week. This disease has made me so miserable - I hope some of the other people on here have more successful stories than myself.
5 hour surgery I am 28 y.o. and was diagnosed with endometriosis in August of 2006. Things happened very suddenly and severely for me. On the 4th of July I experienced my first extreme pain. I had had only moderate menstrual cramps throughout my life and never anything significant enough to effect my daily activities. During college (97-01) I had a few bouts of what I called "death cramps". They would coincide with my period and would only last for and hour or so then go away not to return for another couple of months.
I started taking birth control in 2002 primarily for acne control. In retrospect, this probably held my endometriosis at bay for a little while. In September of 2005 I stopped using the pill in preparation for trying to get pregnant. My husband and I started trying in June 2006, about 9 months after stopping the pill. I didn't notice a change in my periods or cramps, everything continued status quo.
That July of 2006 was the first pain that drove me to seek help. It was like nothing I'd ever experienced. It came out of no where and would stop me dead in my tracks. I went to my gynaecologist who simply wanted to put me back on the pill. This is definitely not what I wanted considering that I was trying to conceive. I ignored it as long as I could, then after an almost crippling episode that occurred during work, I went to see my PCP (no longer trusting my gyne).
He ordered an ultrasound immediately. He suspected either dysmenorrhea or endometriosis. The results showed two large mass filled cysts in my left ovary and one in my right. My PCP referred me out to a gynaecologist that he trusted so I went reluctantly but unable to handle the pain that was now coming daily and frequently. He ordered another ultra sound that showed the same results, each ovary was approximately the size of a softball. I was referred to an endometriosis specialist (I felt very fortunate to have one in my hometown of Pittsburgh).
He did an internal exam not believing that I was even a candidate for surgery because of how quickly my symptoms had developed. After poking around for a minute and almost getting kicked in the face for the pain he caused, he agreed that I was a candidate. I begged him to do what he could to preserve my fertility. I had laparoscopic surgery in October of 2006 that lasted almost 5 hours. The surgeon removed the endometriomas and all of the endometriosis that had grown on my uterus, fallopian tubes, colon and in the pelvic cavity.
He told me he had never seen a case that "sprung up" so quickly and that I was actually in Stage 4. I had been told by more people than I can count that I'd most likely never had children due to the severity of adhesions and damage that had been caused to my ovaries. Well, I am happy to report that doctors aren't always right! I am now 7 months pregnant! I conceived just one month after my surgery. I haven't had any major problems or complications thus far, minus 2 severe pains lasting about a half an hour each when I was 5 weeks pregnant that took me to the ER for fear of miscarriage.
Doctors assume that it was just some adhesions and scar tissue tearing. Just recently though, I've started to have what I think is ovarian aches that are very similar to what I had prior to my surgery. It's making me very nervous as the pain is severe and takes my breath away. It isn't frequent, but it's often enough to be scary. My midwife isn't concerned and thinks it is just ligament pain. I believe that it's related to the endometriosis which I know is supposed to be kept at bay during pregnancy.
I'm a little confused and concerned but feel so blessed to be pregnant that the pain just seems to be of less importance right now. Can endometriomas form during pregnancy? My thoughts and prayers are with those who are still suffering and those trying to conceive...don't give up!
I'm 27, and within the last three months, I have been diagnosed with endometriosis, had surgery to remove my left ovary, a grapefruit sized cyst and my appendix. I also had a few small fibroids removed. I had no idea I had endometriosis. I was in extreme pain, but stubbornly decided not to take an ultrasound because I didn’t want to pay for them to tell me what I thought I already knew.
I thought my agony was from the "functional" cysts (if there really is such a thing!!!) I had been diagnosed with years earlier. How ignorant of me! Well, eventually the symptoms were so bad and went from occurring only during my period to all month long-which made me think something else was wrong. The pain was a terrible, intense, burning sensation around my left ovary (which is where the cyst was attached), and I couldn’t sleep at night.
My periods got increasingly worse. I eventually just quit sleeping in the room with my husband because all I did was keep him up all night. I'd usually cry myself to sleep somewhere close to when it was time to get up. Finally since the symptoms never went away, I decided I had to have an ultrasound. A little over a month later I had my surgery. I had to live on pain pills until then. For my surgery, I had to get a bikini cut because the cyst was so big. That hurt so bad!
Now I am scheduled to get the Lupron shot so I don't lose my other ovary, and therefore my chance to have children. I don't know what to expect. I've read so many horror stories about Lupron. I am already suffering really bad from depression because of the change in hormones from losing an ovary, and don't know what to expect from the Lupron.
It is as difficult on my husband as it is on me, although he tries not to show it. Don't be stubborn like I was. If it doesn't feel right, pay the extra money just to make sure. I probably could’ve caught this a lot sooner if I hadn't assumed I knew what was going on-and maybe my surgery would have been less serious and painful!
Trying so hard to get pregnant
Ok I have read some of the stories here. They all make sense in what I am having. I have very painful cramping and sometimes it feels as though I can barely get out of bed. I have 1 child but recently got married we have been trying to get pregnant for almost 5 months now and nothing so far. I have a bad feeling something is wrong with me but scared to face the truth and scared of what the doctor will say.
My periods are way different than they used to be. My oldest sister has cysts on her ovaries and I don't and can't imagine something like this happening to me. I want my husband to know that if anything is wrong I am sorry. He told me that if anything is wrong we will get through it, but both of us have been very stressful.
I started the pain after getting off the birth control pill after being on it for a year or so. I have very bad cramping and sometimes I just get sooo stressed out because right when I think I am pregnant I take a pregnancy test and it comes back negative then I get my period. Out of 5 months I have only had my cycle 3 times at the most.
I need to know how I can get courage to go to the doctors before it is to late. My mother had no problems getting pregnant and neither do my 2 sisters. My brother has been trying for a year and him also nothing. I don't want to go on knowing that I might have something wrong, I want to find out as soon as I can. I did not have any trouble getting pregnant with my son. But now we have been unprotected for 5 months and have had nothing.
I don't know if I should go with my gut instincts that something could be the matter with me or something could be the matter with him... But I have high instincts that something is the matter with me. I need someone’s advice on what to do and how I should react if I find out that I do have a problem? PLEASE HELP ME!
WOW...not like I thought I was the only one with these problems but now I know I"M NOT ALONE! I got diagnosed when I was 19 (which seems to be a popular age from reading all the stories). I have had 3 laparoscopy surgeries and leap procedure and a chuck of cervix removed due to cervical cancer.
I was on Lupron 3 of the past 10 years with hot flashes, night sweats, insomnia, mood swings etc.... After all this I was told I would never have kids, I have tried the pill, the patch, the ring, EVERYTHING and nothing helped my cramping and back pain etc...so while NOT trying to get pregnancy and esp after being told I most likely would never, I was pregnant, and mind you I was all HAPPY and elated to be pregnant but my doctors were not feeling so great about it. With an incompetent cervix too they scared the LIVING CRAP out of me, telling me at almost every doctor visit which were weekly and weekly ultrsounds too that I would lose the baby.
WELL I had a healthy 5 lb baby boy only 3 1/2 weeks early and he's now 3 1/2. He had some minor issues along the way which they say could be linked to the pregnancy, but I just say HEY, he's alive and pretty healthy so I feel lucky. I would like to have another soon but thinking about going thru all that worry again isn't making me rush too fast! So to all the people out there that are having all these problems with endometriosis ...my best advice is to get a good DOCTOR, one that'll listen to you every time, even if they think you're nuts they should still do what ever they can to help.. (mine does and I love her for it).
I am now 32 and even after having a baby I still have all the symptoms and I feel I will need another surgery soon unless I get pregnant again, and if I do I will most likely get a hysterectomy afterwards ... I was told at age 19 to get one and THANK GOD I listened to my heart and NOT a doctor!
I was looking on this site because I can't stand the pains any more...with sex, just day to day and the chronic back pains I'm about ready to cry every day.. I hope some day there will be a cure for this and that surgery isn't the only way to detect it!
I just heard the endometriosis institute in CHICAGO has a new laser detection system so I may call and see how that works, rather than an invasive surgery AGAIN.....good luck to all of you and hang in there..be persistent and take care of it...don't let it ruin your life, it really doesn't have to!
Stories - Page 14