Endometriosis Stories - Page 20

Elyse Glickobrn
United States

I was diagnosed 9 yrs ago with endometriosis after a laparoscopy. Not a horrible case, already had 2 children, but my symptoms of very painful ovulation could not be tolerated. After my laparoscopy I was pregnant with my 3rd child 2 mos later, and had my 4th 2 yrs later.

Since than, I have been on birth control pills. Over the past year, now 44, I have been experiencing severe ovulation pain, lasting a week, lower back pain, and some arthritic symptoms- all on the same side it was on then- my right. I also was experiencing GI symptoms- which my gastro feels may be IBS. I, do not think so. I think its endometriosis. I have had numerous sono's- all normal. Just pain!

Now, last week, my ob/gyn felt I should try a mirena IUD. He feels that may really help with my ovulation pain. We did discuss doing another laparoscopy, he rather try this for 3 months first. I am in such discomfort, that it is taking over my everyday life.

My lower back aches, my ovary aches, and I am so tired of this! I did mention to him the fact that yes, I have been on the pill all this time, but can't it still come back?

And, all my GI issues, and arthritic issues? Isn't this all connected? I am going to be 45, and so tired of complaining. My life is too busy for this!!! He told me that with menopause, it does go away- but why suffer. Any suggestions would be wonderful! I do love my dr., and totally trust him, but I know I am right. 

Michelle Made
United States

I am 22 years old and i have been going through a hard life with endometriosis, was first diagnosed with endometriosis when I was 20 years old. I was going from doctor to doctor for having really bad pelvic pain and side pain. Basically I was just sick all the time. My life has been changed from that point until now I can not go anywhere with out feeling like I’m gonna pass out. This has made my life unbelievable really.

Now since I had endometriosis I been missing my period every month, and just been having to deal with this hard pain. Well now life for me and my husband has been so hard because we been together for 7 years and we sill don’t have any kids. With this problem I am always throwing up and I feel sleepy no matter how much I sleep.

Just believe me, who ever is suffering with this or has any information, can you please leave me an email or give me your email. I will be more then happy if you can help me out. I really want to be cured and have a kid. I just want anyone out there with this problem to just try their best to keep strong like I’m trying to, because hopefully one day we all can be free and live a normal life and have a family. Lots of luck to everyone suffering with endometriosis love, Michelle 

Salome van der Westhuizen
United Kingdom

Hi everybody, my name is Salome and I am 28. I am a South African that have been living in the UK for the last 5 years. I think my story started when I started my period, but I have been diagnosed with endometriosis 3 years ago...here is the whole story... I started my period end of my 13th year. I never really knew when my period will be as I always used to skip, sometimes 2 months, sometimes 4 months, maybe sometimes 9 months, but I always had painful periods.

When I was 19, I had a cyst on my ovaries, and they removed it. I still struggled with my periods and then when I was about 21, I had the same pain, but I was diagnosed with IBS. I also used to suffer from depression my whole life. The year went past and 3 years ago I had the worst pain in my abdomen (right side) and terrible pain during intercourse.

So I went through all the pain of England’s medical procedure, and eventually I was booked to have my first laparoscopy, where they found endometriosis and some adhesions. The pain in my abdomen went, but the intercourse just got worse and worse, so bad I told my partner that I do not want to have intercourse before we get married.

So here we are in 2008, we got married in the mean time and the pain is still there, so I went back to the doctor and they sent me for another laparoscopy. So I went in and 4 months later I am in more pain than ever before. 2 Weeks after the operation I was still in pain and the drs say that the endometriosis has come back.

I don’t know how it works, but now I am really suffering with back pain, abdomen pain, I feel very, very low, I hate everything about myself, I am always tired, and my stomach is very bloated. Sometimes I struggle to walk and I have headaches. Now they want to put me on the Zoladex injection, but I don’t know what to do, because they say it affect your fertility. I am really fed up and really need some advice. Thank you Salome 

Helen Mercer

I just had to write a story after reading so many story's about endometriosis hardship. I guess my story starts off pretty typical. I started getting painful periods in my late teens and just figured I was one of the unlucky ones. As did my family and friends. I wouldn't be able to do anything for the first full day of my period. The pain would be (as many of you have also experienced) so bad that I would vomit and often have diarrhoea.

I never really thought of telling my doctor that I had painful periods, I honestly thought I was a normal period sufferer. I do know now that there is no such thing as severe pain and being normal!

About 4 years ago (when I was 32 years old), my doctor became concerned about a growth on my cervix, which she observed during a pap test. She sent me to a specialist at Saint Michael's Hospital which is located in Toronto, Canada. He did a pelvic exam and took some tissue samples.

All of the tissue samples that he took came back as benign. Thank God! However, he then told me that he suspected that I might have endo. He gave me me options, but said he really wouldn't know for sure unless he did the laparoscopic surgery. About a month later I went in for the surgery. After the operation my doctor told me that the endometriosis had been pretty extensive.

One of my fallopian tubes was 98% blocked the other one was about 80% blocked, I had endometriosis on my bowels and ovaries, as well as a couple of cysts on my ovaries. He said he removed most of it and told me, "if you want to have children do it soon!" Okay then, that's a little bit difficult when your not even in a serious relationship!

He put me on the Evro-Ortho Patch (which I was told doesn't have the same amount of hormone in the Canadian version as the U.S. version) and I had been on that patch up until 3 months ago. I took the patch off a month before my marriage. Now that I'm settled and in a relationship I would love to get pregnant. I have a feeling I might need to go back in for another laparoscopic surgery before that will happen??

The surgery and being on the Patch did help me quite a bit. I still don't get cramping anything near what I used to get before the surgery. I used to get horrible aching pain over my ovaries around the time of ovulation, and I don't get that any more as well. I do get cramps (that sometimes take my breath away) during a large bowl movement.

I suspect the endometriosis is back on my bowels. I guess that is a small price to pay to not be completely debilitated during ovulation and menstruation. Right now I am praying that my ovaries and fallopian tubes are okay. Bowel pain is a small price to pay to be able to get pregnant!

I know not everyone lives near Toronto, Canada, but if you can save the money I would highly recommend coming to Saint Michael's hospital if you are not getting the treatment that you need where you are.

Saint Michael's is a woman's hospital that specializes in women's reproductive issues etc. The people there will do what you need to have done to help you and they won't pat you on the head and say "there, there young lady, it's just cramps, take this pain killer and try to be a little stronger".

I hope all of you can find some relief. I thought I was so unfortunate because I am only now at a point when I can try to have children (I'm 36 years old now!), but it appears that I have received very good medical help up to this point. The right doctors are out there, don't give up. Remember, it's NOT NORMAL TO HAVE SEVERE CRAMPS WITH YOUR PERIOD! And don't let anyone tell you differently! God's love to all of you.

Mary Herold
United States

Well, I am delighted in some way to see there is someone/several others out there that we all know we are not crazy!! So, I'll try to tell my long story as short as possible and hope that some of it may help those struggling & beating this disease! I am 37 yrs old, at the early age of 12 I had a terrible pain in my stomach area for days and was trying to play strong, always have.

After about 4 days, I toppled over at school and was rushed to the hospital and thought to have a ruptured appendix.. nope!! An OB/Gyn on call came in and gave me a pelvic, what a way to break virginity at 12!! I was horrified and sick, but had a grapefruit plus sized cyst on my ovary. They put me on medicine to calm it and then for 12 years I was somewhat stable on birth control.

Pains, yes, but I was extremely active and it seemed under control. By the time I was 21 and became more physically active it started acting up more..to advance speed on my situation,

I had 3 lapraroscopies within 4 yrs, they cut the nerves at my tail-bone that they thought would help w/ back pain. Then came the Lupron for almost 18 months, holy cow!! Hot flashes, mood swings at the age of 25, not good!! Within 3 months of being off Lupron, it was all back again.

I finally decided to have a hysterectomy (partial), the pain was too bad and was literally taking over my life for weeks at a time. Literally when being rolled to recovery from the hysterectomy, I felt relief!! Fast forward three years, it was back! My doctor of over 20 years (the one from the ER at age 12), did not believe it!!

I left him, found a wonderful doctor and he went in. Sure enough, endometriosis was all over!! Cleaned me out and I said, what now?? Feeling as though I knew it was not over (we still left my ovaries, I was only 32 at the time).

I then came across Homeopathic ways and met a lady that practices it, IT WORKED!!! I do not know much about it, but it helped me for the past 7 years be pain free!!! Here is the bad news, it is back again. Rearing its ugly head and this time like no other I can recall, the bloating in my belly and higher part of my belly is beyond painful! Nothing relieves it. Went to the doctor, Deprovera shot, no reaction.

Looking to have surgery again soon, wonderful insurance is giving a fuss, so may have another 10 weeks to work on how to control it as best I can. It is amazing, every test, CT scan, blood work comes back normal. We know it is in there and it has to come out, I am praying my ovaries are not affected.

I plan on going on a more strict diet and calling my Homeopathic lady to help me again for preventative measures. I can only say, so glad to have found this site!! I am in the same situation as so many of you and pray that there will come a day they have more answers.

Until then, be strong, it only makes us stronger!! Believe me, bridges look good to stand on some days, but I am not going to let this lousy disease take my life from me. Good health to each of you and I hope my story helps know we are all encouraged by one another’s words. 

Krystal Kelly 
United States

I am a 23 y/o that has suffered from endometriosis since I was 15...I can remember when it all started...I thought I was going to die...The bleeding was so bad that I had to wear a super size pad and a super tampon changing it at least every hour or less...When I first went to the Dr. for this they said some women just have bad bleeding...Well then hit the pain it wasn’t like any other pain. I don’t know how many trips my mom took me to the ER cause it was so bad...

Finally they told me to go to a gyno...When I told him my signs and symptoms he told be more then likely I had endometriosis...So he performed a laparoscopy and removed tons of it...it was so bad it was on my rectum and colon wrapping around it, to where he didn’t know how I was able to have a bowel movement.

After a couple of months I began having the same problem bleeding through b/c pills and the pain...My Dr wanted me to try lupron OMG...I gained 60pds. I hated everyone and myself, it made me feel crazy and it didn’t even help with my problem still bleeding and still pain. After 3 months I never took it again and went right back into surgery.

For the next several yrs I was having surgery once a year. I was able to get pregnant at 21 but had a surgery right before me and my husband conceived.... Then one right after my son was born...Now I’m 23 and its no better....whoever says having a child helps, WRONG made mine worse....I’m really taking it into consideration to go ahead and have a complete hysterectomy and it just breaks my heart I’m only 23 and would love more children but its not fair for me or my body any more.

I’m sick, depressed, tired and in pain I just don’t understand. I hope my story has helped to someone that’s in my shoes. I feel for ya, believe me its not right or fair that we have to deal with this. 

Jenn McLaughlin

Interesting account of being diagnosed by a reflexologist. 
For the last 7 years, I suspected I had something wrong with me, due to pain in the pelvic area. No one was able to figure it out, I went to specialists, even had bladder surgery? No answers. In November 2006, we had a health and wellness week at work.

I signed up for every workshop except reflexology. A person never showed up to their reflexology apt (at this workshop), so our fitness instructor came up to me at my desk and said come to this reflexology apt, you'll love it.

I said nope too busy, my boss then said no go! So I went. This reflexologist began massaging my feet and I felt an area in my foot that was very sore and sensitive. She asked me if I had painful periods, I said yup, and then said I think you have endometriosis.

I thought no way...so I researched it, sure enough I had most of the symptoms and felt some what relieved that after all these years my answer may have come. I went to the doctor....and 4 months later had my surgery..they diagnosed me with endometriosis.

My next thought was, no wonder I haven't gotten pregnant (4 years without protection). My husband under went a series of fertility tests as well. He found out he had fertility problems. Our chances of natural conception were extremely low.

After hearing about our "low chances" I moped around for about 2 days thinking this is gonna be impossible. Then I snapped out of it and remembered if God wants us to have a baby, the impossible will happen. Still at the back of my mind, I kept thinking about the statistics.

Well 6mths after my surgery in Oct 2007, no fertility drugs, no ovulation test, no trying...I found out I was pregnant. I was in so much shock and my mind kept saying "this is impossible"...but it wasn't. I just had my healthy baby girl in July. I want to encourage all of you suffering from infertility or with this disease to remember nothing is impossible. Don't give up hope!!! 

Stories Page 21