Endometriosis Stories - Page 7

April 2006
United States

I was a long time suffering with endometriosis. My husband and I tried for eight years to get pregnant and I was told not to worry...finally I found a doctor that listened and he did a Laparoscopy and found that my uterus was stuck to my intestines and that was why I had such terrible symptoms and diarrhoea. He cleaned it up and put me on Lupron for six months and thank God, I got pregnant two months after stopping the Lupron.

My endometriosis was kept at bay for about six years and then it started again. My primary doctor told me that I must be depressed and that was why I had the pain. I finally told my GYN and he said lets do another laparoscopy, guess what, I had a huge tumour on my right ovary, which at first looked like ovarian cancer so he did not remove it...I was sent to another specialist who did a total hysterectomy and said he was amazed that I could even walk with all of the adhesions and scarring.

Once again my left ovary was attached to my colon and my uterus had adhesions going to my diaphragm. After this surgery I did not have to take any pain medications because I felt so much better. Going through menopause was rough but worth it! My niece is now suffering at 24 and has not found a doctor who will treat her endometriosis because they feel if they do anything now it will compromise her fertility, but she is also suffering. Hopefully we will find someone who will treat this now. Good luck to everyone suffering with this out there. 

April 2006 United States 

I got married when in 2000 and when I was 23 yrs old. My husband and I started trying to get pregnant but just couldn't. Two years later I started spotting, having abdominal pain and etc. Went to see a doctor and about 6 months down the road had surgery and was diagnosed with endometriosis. I was told that getting pregnant would be almost impossible but in 2006 I got pregnant and had a little boy. After I had a C-section problems started with my period with a lot of abdominal pain. After about 7 months of going to doctors I had surgery and was diagnosed with Endometriosis, with a lot of adhesions and scar tissue. I am now 30 and trying to get pregnant after all of that. 

Jennifer Vetter
United States

I have read a lot of stories here and find that though I suffer from endometriosis, I am so blessed compared to a lot of you--my prayers to you all. My first blessing is that I have 4 beautiful children whom I love dearly and for me to not be grateful for them would be crazy (for I know some women are unable to conceive).

I have a husband who is one of the greatest there are and we are still deeply in love after 8 years of marriage. I so hope to not seem like I am bragging--only very grateful. I have a question for you all but first I should give you some of my history. I have always had painful periods, but I could still go about my day. I married at 18 and got pregnant after having only one period. I have always had pain during intercourse, but I was not very comfortable talking to my doctor about it. Had a beautiful baby girl. After that, I got the depo provera shot twice and then didn't get it again because we couldn't afford it.

We started TTC when she turned two after I had a miscarriage and was very disappointed. Then I started having more painful periods and only every three months, till not any. Figured it was because of the Depo, so the doctor put me on a hormone to get me to ovulate. Everything was regular after that. Well, I started having cramps low in my abdomen without my period, and it was time for the annual, so I scheduled it.

They did the pregnancy test they always do when your not sure if your pregnant and to my surprise, I WAS PREGNANT!! The doctor just figured that I was having the pain because I was pregnant. I went on to have a beautiful baby boy and didn't use protection because I figured we couldn't get pregnant anyway since it took me a while getting pregnant with my second (boy was I dumb) and got pregnant again! In a short while, we went from being a family of three to a family of 5!

We were more careful after that one and I started having symptoms of endometriosis again. I remember thinking I was going to start my period several times in a month and when I did start, I was surprised. It was like I had no warning. That was when I started timing them again. I was getting them every 30 days, but I would have the cramping three out of four weeks and it got worse when the period would be letting up. I couldn't understand it.

I read about problems that it could be and realized that my whole family (women) had a history of needing hysterectomies at an early age. I asked some of them and found that endometriosis was the case in almost all of the women. Man, I knew this was hereditary and wondered why no-one warned me? Maybe they didn't know. Oh well, I was needing another annual (quite overdue actually) so I scheduled one.

My youngest was 1 and a half so we weren't trying to have a baby yet. So I knew the pain wasn't caused by a pregnancy this time. I finally said something about the pain with intercourse and told him about the pain and other symptoms, like feeling I was having braxton hicks contractions (which was weird because I knew I wasn't pregnant). He examined me and told me that he was pretty positive that I had endometriosis and he could feel the lesions in my vagina.

He told me that I wasn't crazy in feeling like I was having the bh contractions because the muscles will sometimes contract when the endometriosis would burrow into the muscle walls. I knew that infertility was an issue here, so I asked about getting pregnant and he said that would be great for it, but if you can't get pregnant in 6 months come back and we will start the lupron.

We got pregnant right away! I was so happy! I was pain-free as far as the endometriosis goes after the 2nd month. And now for the question. Had the baby by emergency c-section for a number of reasons and recovery was slow. After 5 weeks, I felt great, though. Now, he is 10 weeks old and I have started to have strong pain from the belly button down (but it doesn't seem to be at the incision site) especially when I urinate. It feels like I pull everything down and it's like a drain and everything is going to get sucked out with the urine. It is strange, and hard to describe. It doesn't feel quite like menstrual cramps, but like it is all of my organs below my belly button. It lets up a while after--until I have to go again.

This is the 6th day of this and I am not sure if it is the endometriosis or something else. I had my check-up at 8 weeks because he was out of town when he turned 6 weeks old, and all seemed well. I have not had a period yet but could be ovulating as you never know when that will return. I got on here today and saw these stories and thought maybe one of you could help me.

I should add that I don't think it has anything to do with an infection of the bladder, it just feels like when I empty it, I am upsetting something in there that got pushed up by the fullness of it. Still not sure how to explain it. Oh and I never had a internal examination to confirm the doctor's diagnosis of endometriosis either. 

Melissa Jensen 
April 2006
United States

Hi I’m 22 yrs old and am not sure what is going on here with my reproductive organs. I'm trying to find answers as to why I'm having trouble getting pregnant, and when I finally got pregnant I had a miscarriage at 13 weeks. Here’s a little background on me. My sister has endometriosis and my other sister has pcos. I think I may have endometriosis. I know that I don't have pcos, well I could but is not likely because I do ovulate and don’t have the symptoms for pocs.

Anyways when I was a child of maybe 11 or 12 sometime before I started getting periods my sister, the one with endometriosis and I were getting checked out at the doctors office, well when he was doing the pelvic exam he noticed something about us like he could already tell that we were going to have endometriosis. I asked what’s that and he said that it was something that could effect our ability to get pregnant.

Well my sister who is older than me got on bc. only after one month off the pill she got pregnant right away. But me, who has been having unprotected sex for like five years has only gotten pregnant once and lost the baby. Well back to the beginning when I first got my period, I had a strange feeling about it, but I think that’s normal for any girl who first gets her period but something didn't feel right about it.

Maybe a year into getting my period the pains were so bad and got worse with every period. I remember once I was looking at motorcycles with my ex when I got these shooting pains in my side that would come and go. I was confused, I'd never felt anything like it before. And then I discovered endometriosis. So I figure that’s what is causing all this.

Well now is different. I barely experience pain with periods. Nowhere as severe as before, only like a few days before and a few days into my period I'll have like cramping on and off. But during sex if penetration is too deep it will hurt. But what really concerns me is my ability to have babies. I'm starting to get so depressed about it because every month I'm mistaking pms for pregnancy. And I get my period and I cant take it any more. I have a feeling I'll never be able to have kids but I can't stop dreaming about it. I fantasize about it a lot and I know now not to get my hopes up because of so many let downs. But I can't stop thinking about how good it would be to have a little me.

So now I'm spiralling down depressions evil sink-hole. Can't be strong now. The one thing that’s supposed to be your right as women isn't for me. And I know I'm not alone, but its just so unfair. Like God is playing some cruel joke upon me. Now I question my faith. If God is supposed to be loving and he's everywhere then why can't he give me just one break in life. I've been through so much, my father died when I was little to a drug overdose. I'm watching my mother kill herself my taking a whole bunch of vicodin everyday. And I've always been compared to my sisters. And my oldest sister is very anorexic. 

Jessica Vey 
May 2006

Love and hugs to all!!! Before I tell you my story, I want to tell you what works for the dreadful pain pain. First of all, I went to see this really helpful naturopath, and I want to tell you what he told me. First, endometriosis is caused by excess oestrogen (basically not enough progesterone) in our bodies. So GET off your birth control pills. Think about it, birth control pills add MORE oestrogen, and only offer a synthetic form of progesterone, called progresterone.(sorry for spelling mistakes. )Look up natural progesterone cream and find out for yourselves.

About 2 years ago, I was eating really healthy, exercising and using the cream, taking primrose oil, fish oil, flax seed oil, and vitamin E(very important to keep the scars from hardening). Also its important to get your immune system up. Bottom line, do your own research... Anyways, I thought the pain was gone for good, so I slacked off and a year later it came back. Its so bad, that I got horrible grads in school, (in 3rd ) year of university, and I get so depressed thinking about how I will deal with everyday life activities.

The worst is the fear of not knowing what is exactly going on, and having doctors prescribe you anti-depressants. Anyway, here are some tips that make it easier.

When pain is just starting, get out your best friend, the heating pad. TAKE IT EVERYWHERE. Call mom or a friend who can tell you its ok. Prepare mentally for it, sometimes it helps, and never give up..... Get a support group, and did you know there are grants available for medical assistance? Here is a really good site for info. (Oh here comes the pain, got to go, guess I'm in for another lovely night in the bathroom, crying why me?) But I am determined to get back on track, with the diet and CREAM, GET THE CREAM, and avoid all hormone infected meats (anything not organic) and NO DAIRY, just adds to the hormone problem. Here is the site www.thefertilesoil.com/Treatment/Diet/Suppliments/Usana.php or e-mail me for more info, Ps. I hear that Chinese acupuncture is REALLY effective for pain and treatment, especially with fertility and pain management. Research, trust yourselves, know you are not alone, fight and don’t forget to reach out for help. When god closes a door somehow he opens a window. 

May 2006 

I had my hysterectomy just 2 months ago (March 8, 2006). You see, I suffered from endometriosis for 5 1/2 years. It started when I was 18 years old. Every time that I would go to the doctors to see how come I was always sore and how come it when I had sex, they just kept telling me that I must be pregnant. That was their solution to all my pain.

It never came back to be the problem. After 1 1/2 years of complaining to my doctor about my abdominal pain she told me that it was all in my head because she could find nothing wrong with me. She then finally sent me to see a gynaecologist. He diagnosed me in 10 minutes with endometriosis. I went for a laparoscopy, that worked for three months and then it was back, so I went for another one, three months sick again.

He then put me on Lupron shots ($400/shot) for 6 months. After I was done my treatment I had a Laser Laparoscopy. After that I felt good. 8 Months later it came back. I went back to see my gynaecologist and he told me that if I wanted a family I would have to do it now. It was a good thing that I was 21 years and had a stable relationship for the last 3 years.

I went home and we talked it over and we decided to try for a baby. There was only one problem, I was given only 6 months to conceive ( I couldn't be off treatment for any longer). Four months into trying and I was starting to worry that I will never get pregnant or have the chance to have a baby. This was one of my dreams in life, was to have a baby of my own. I went for hormone testing, that came back fine. I went for blood tests, those came back fine also. I went for fertility testing and there was the problem. I wasn't producing any eggs at all.

The doctor told me that there was one last option, fertility drugs! So, I took them. I became pregnant the first month I took them. My fifth month! I was sick through out the pregnancy because of all of the adhesions on my uterus so I was on bed rest for 5 months. I had a good delivery and got the boy that I have always wanted. 3 months later it was back worse than I have every had it. I went to the doctors crying because I couldn't take care of my son the way a mother should because I was so sore.

I had another laparoscopy for treatment of my endometriosis. I felt great for 8 months and back to the same old thing. I went to his office again and told me that he has to send me for emergency surgery because he had found abnormal cells in my cervix and that they needed to be removed and to do a hysterectomy at the same time. I was told that he will try to save at least one ovary and tube if they weren't damaged too bad so I didn't go into menopause.

He saved the left of both! Now, I realized that I haven't felt this good in 5 1/2 years and that it was about time. I am now finding it hard that I will never have another baby, but all I keep telling myself is that at least I have my miracle baby. 

May 2006

I was diagnosed with endometriosis in June 2004, I was 24 years old. I always had a painful menstruation and thought that it was normal. Until I was getting ready for work one day and my stomach was big like a 5 month pregnancy. The doctors thought I had ovarian cancer, what they found was endometriosis. I had a major laparotomy and they managed to get it all and left in my reproductive organs. With the exception of a piece of my left ovary.

I was put on Lupron a month after that and I thought I was going crazy, all the side effects where terrible and I thought of taking my own life more once. Just recently I went to the Doctor and they found three more endometriomas. I don't think I have ever been so scared. I want to have a baby, I have wanted to be a mom ever since I held my first baby doll. And I have this fear that I may never experience motherhood that way. To see myself in my child’s eyes. I hope and pray that it is in Gods plan for me to be able to have my own baby. I also am glad that I found this community, because for the first time I don't feel alone. Tisha. 

May 2006

I was about 11 when I started my period. I had heavy 9 day periods. Doctors didn't have much to say so I just thought it was normal. I would miss a couple days of school, my cramps were so bad. I had no problem getting pregnant twice. But after my second son I was in so much pain it was hard to be a part of life. It took three years for them to find a golf ball sized blood filled cyst.

They scheduled me for surgery. The doctors forgot that because it could be endometriosis it could have connected my ovary to my intestines. So what was supposed to be a tiny cut ended up several inches big. 4 months after surgery I was in so much agony I couldn't leave my house. Finally I found an endometriosis specialist that did excision surgery instead of laser. I talked it over with him and decided to have my uterus taken out but to leave my ovary.

That was 4 years ago. I have gotten a little of the pain back but still nowhere near what it was when I had my uterus. I also think excision surgery made a difference. I never did try lupron because there were several websites that told of the many drawbacks to taking it. 

Kearsten Lockhart 
May 2006
United States

I was diagnosed with Endometriosis and Interstitial Cystitis a year and a half ago. I can't make love to my fiancé (thank God he is so understanding). I fear I can't get pregnant (the one miscarriage I had was unbearable). Any job I get has an insurance provider with a pre-existing condition clause that says I have to wait a year for treatment. I am in pain EVERY DAY!!!

I had a laparoscopy last year, and then they put me on Lupron which, basically, put me into menopause. I was pain free, then, but I had terrible hot flashes every 20 - 40 minutes, couldn't sleep, and had no sex drive. As soon as the Lupron wore off, I had symptoms again. My doctor put me on Elmiron for the Interstitial Cystitis, but neglected to tell me it would make my hair fall out in clumps. As of yet, I have nothing and no one to help me. I just randomly came onto this site looking for advice on insurance companies that might cover me...now, as opposed to a year from now. I'm so tired. 

May 2006

Hello all, I am 39 and was diagnosed with endometriosis when I was 32. I was put on Lupron shots for six months, which did not help much with the pain. I had a hysterectomy, my left ovary and my uterus was removed, I still have my right ovary. In 2002 I had surgery to remove some more adhesions from my bowel, abdominal wall and the right ovary. In 2003, I had surgery again to remove more adhesions and they removed my Omentum, which had scar tissue from my previous surgeries.

For the last 8 months I am having symptoms again, cramps in my abdomen, standing too much also causes problems, walking too much I feel aches in my right ovary. I feel bloated constantly and have gained 40 pounds in the last 4 yrs. My Dr. found a cyst on my right ovary that is 4cm. After a month of treatments the cyst is still on the ovary and has not gone away. I am having surgery on June 12th to remove my last ovary. My fear is that I will go through depression once it is removed. I do not want to take hormone treatment because of the side effects. Anyone out there who is in the same boat as I am, are there herbal remedies that I can take in place of hormone treatment. Arlene 

Nerds Bright
June 2006

I am 25 years of age I was told by my doctor like any other young woman don’t worry about it, it is just bad period pain. I got a second opinion then had to see a consultant. I had a laparoscopy they confirmed I had endometriosis. I had never heard of it like so many others. I had a range of treatments, the coil had to be removed it was causing to much pain, depo provera, zoladex, I had laser treatment with another laparoscopy.

I bled constantly for two years. I would be lucky to not bleed just for one day. My consultant then decided to do a hysterectomy, I already had my children at a young age, my little girl was seven and my son was four. I had my family I didn't want any more.

I felt wonderful after I had it done in September of last year. The consultant left my ovaries at first I didn't have any problems, then over Christmas I had the same symptoms I had suffered before, the endometriosis had returned. It is now on my ovaries. I am now waiting to go back in to have my ovaries removed. Maybe once they have been removed I can go back to lead a normal life and enjoy being a mother to my children. If my doctor hadn’t persisted it was just period pain, my consultant said I could have been treated sooner and wouldn’t have had to go through all this now at such a young age. I didn’t realize how common it is.

They say it can be hereditary but no-one in my family has it. My advice is don’t ignore any pain, get it checked and if you are not happy always get a second opinion, and don’t suffer alone like I did. 

June 2006
United States 

I am 22 and I was diagnosed with endometriosis last September. I started having troubles before that, and once to the point that I had to have a laparoscopic surgery done on my left ovary because of a cyst so large it was turning on itself and cutting off blood supply to my ovary.

I just finished the lupron depo shots for six months and I'm now on the seasonal birth control. But two months after I was done with the shots I started bleeding daily and have continued to bleed for the last three weeks. And along with the bleeding is constant pain to the point that I don't want to wear pants sometimes, and I can barely function!

My professors don't understand and neither does my work so instead I go to classes and work in pain. I'm 22, I should be going out with friends, running around and not worrying about if I brought pain medication with me! I have no idea were to go from this point! 

Cecile Legacy
June 2006

Hello, I am 33 and have been suffering from painful periods since the age of 13. Last year I had a laparoscopy done and they found severe endometriosis and also two cysts on my left ovary, one in 6" dia and one in 3" dia. Doctor says I am too young to have a hysterectomy and I should try this drug called lupron.

I did, for six months felt great, except for hot flashes, sleepless night and sore bones. I have been off the drug for a month and a half. I was having intercourse when I had to stop I was in so much distress. I had to curl up into a little ball. I cried myself to sleep that night. Thinking about what to do now, should I go on lupron permanently and take two hormone pills a day until I am 40 or should I have a hysterectomy.

I don't have any children, would like to have one. Doctor says my chance of having a child would be a miracle. I would just like to have a normal life like a lot of other 33 year old woman. Thank you for listening to my story. 

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