Endometriosis Stories - Page 15



Had 3 laparoscopies and major surgery 

Hi my name is Melissa, I'm 32 years old, married 1 year and do not have children. I have suffered with endometriosis for over 16 years. I also have chronic IBS and was diagnosed with hyperthyroidism about 4 years ago. I had my first laparoscopy at 19 and was then put on Lupron treatment for 6 months, which I warn all women who are told by their doctors to take this terrible drug, DON'T DO IT, its not worth it!

It has ruined my life and I truly believe that it only made my endometriosis worse and 13 years later, I still suffer from the horrible side effects, it did not help me one bit. I took anti-depressants for 10 years which I finally kicked about a year ago but still take sleeping pills every night. I have taken an array of birth control consistent for 15 years, depro, you name it I've tried it.

I have had 3 laparoscopy surgeries to remove and treat the endometriosis, but it always comes back bigger and better. In January of this year I started having rectal bleeding which at first I thought was "normal" for me during my period but it became worse and I would bleed rectally just urinating. After several tests they found I had a large mass causing a blockage in my large intestine and thought it may be cancer but wouldn't know until another laparoscopy was done.

I feared the worst cancer, and thought I was going to die. I had surgery in March they removed over 10 inches of my large intestine due to a large endometrioma had grown into my large intestine which had caused the blockage. I was covered with endometriosis again but they did not remove it all during that time, said it was too much trauma to my body at one time.

So now only 6 months later the pain is back I had an ultrasound and found a cyst on my ovary and was told my only options were doing Lupron again or total hysterectomy as treatment. Well I knew that the Lupron was no option for me, been there, done that and I would never go down that road again EVER! So now I'm scheduled for a complete hysterectomy on Oct. 15 which now after reading all the horror stories from women who have had hysterectomies thinking it would cure their endometriosis and it still came back, totally freaks me out and I'm thinking of cancelling surgery.

What's the point if its not going to fix me and really not looking forward to hormone replacement for the rest of my life. My husband and I have just celebrated our 1 yr anniversary but have been living together for 9 years. We had talked about having children in the past but involved with our careers we just were not ready, and now I really regret waiting, we may never have the chance, which is really depressing, but of course we can adopt which we are fine with.

I'm very thankful to have found this website, it has truly helped me reading these stories knowing I'm not alone. I feel like no one understands what I have been dealing with for the past 16 years, my girlfriends, co-workers all pretend to, but if you haven't felt the pain, agony, depression of dealing with this awful disease then how can you possibly try to help.

Well I've decided to seek a third opinion and I'm going to see a pelvic pain specialist today which is the only pp specialist of his kind in the state. I don't really expect he will tell me anything different I didn't already know. I've seen nearly 12 doctors/specialist over the years battling this disease, I just want to make sure I'm making the right decision. To all my endometriosis sisters out there, just want to let you know I feel your pain and my only advice is keep your head up, stay strong, always trust your instincts, you know if something is wrong, don't let anyone tell you "its all in your head" or "not to worry".

Don't take just one doctors word, get a second and third opinions, and if you really think you want to have children someday but aren't ready and you have this disease, don't wait you may never have the chance. I wish you all the best and pray that someday their will be a cure for this disease. 

Keeley Holliday  
United Kingdom
Oct 2007

After reading some of the stories on this website, I thought I would write and let you all know of an email I received from "The Endometriosis Remedy". It tells you what herbs heal endometriosis and where to purchase it from. Thankfully, I do not suffer from any endometriosis symptoms even though I have been diagnosed with severe endometriosis.

It was only found after a scan was carried out and I was found to have 3 large cysts on my ovaries. A laparocsopy was carried out to remove them and that’s when the endometriosis was found. As I had not complained about any pain, it wasn’t removed, just "divided" to stop any future pain.

Have any of you tried acupuncture and Chinese herbs? I tried this before having IVF treatment, and although I do not get any symptoms, it did change my cycle. Chinese herbs are apparently quite powerful. If you want to know what I was taking, drop me an email!! You can buy it in the Chinese health shops and acupuncture clinics. I have purchased the remedy called Endoclear (from the link below) and this has also had an affect on my cycle. You may want to try it as a lot of you seem to suffer from terrible pain. Its worth a shot! Best Wishes Keeley http://www.endoremedy.com/a/herbs/ 

United States
Oct 2007

Hey everyone! My name is Lauren. I am 18 years old and I just found out that I have a severe case of Endometriosis. I am the youngest case my OBGYN has ever seen. I was told that I could never have children. It broke my heart because I met the love of my life and we both want at least 4 kids.

I have been reading a lot of your stories and you are all such extraordinary women. Just do me a favour and don’t give up hope. I inherited this thing from my mom. She was an extraordinary woman. She was pregnant 14 times; they all died in her 2nd trimester, so she sat down one day and just started to pray like the world was coming to an end.

Within 2 months my mom found out about me. 9 months later I became her little miracle. So ladies, PRAY!!! a lot and never give up! There is hope for everyone. If anyone ever needs cheering up, send me an email. GOOD LUCK!!! ~The Little Miracle 

Tania McPherson 
Oct 2007

I am 37 and have suffered with severe period pain since I was about 13. My periods commenced when I was 11. The pain symptoms I get is intense with a dragging sensation (as though something needs to come out), aching back, feeling bloated, heavy bleeds with blood clots. I will rock back and forth with the pain, hot and cold sweats.

When I was in my teens and twenties vomiting towards the end of day 1 seemed to help. As though using the muscles to vomit somehow managed to ease the pelvic pain. I would be exhausted after and would sleep and sleep. I remember my mother taking me to the family doctor who would say "Every girl gets period pain, take panadol". Panadol never helped me at all, neither did other tablets prescribed for period pain. I was put on The Pill as treatment for a number of years, different types of The Pill, some would help for a couple of months but the pain would come back.

I gave up seeing doctors as they didn't appear to believe that I suffered so bad. I then questioned myself, maybe I'm just a wimp and if every girl gets period pain why can't I put up with it. Suicidal thoughts would come into play sometimes when the pain didn't seem like it was going to ease. I would dread the day I would get my next period. It is only now at age 37 that I realise how this has controlled my life.

The thought of having kids has always terrified me. How could I possibly cope with the pain of child birth if I can't cope with period pain. I've suffered from injuries from accidents, two badly broken arms once after a cliff fall and the bone in my right arm was very bowed, it was almost pushing out the skin. It hurt all right but my period pain was a more intense type of pain.

The only reason now I am seeking help for this period pain is due to having very early stages of cervical cancer in which I have recovered from recently. Upon my check ups with the gynaecologist, I told her how my period pain has recently come back. I had an ultrasound 2 weeks ago and it reveals I have Adenomyosis. I read that Adenomyosis is usually a condition some years after child birth, but I have never had kids. Surely I couldn't have had Adenomyosis since I was 13???

I have an appointment with my gynaecologist in a couple of weeks to discuss my ultrasound results. I am wondering if perhaps I have had Endometriosis since I was at least 13 and because this was left undiscovered due to doctors not taking me seriously I've got Adenomyosis as well??? I feel cheated and a bit angry that if I had had proper help years ago I would be ok now and maybe have lead a 'normal' life.

As a child I would talk with my friends how one day I would be married and have children. Well I soon got that idea out of my head once I got period pain. This site is wonderful and although I only come across it last night, it has helped me not feel so alone. 

Dawn Christensen  
United States
Oct 2007

I was diagnosed with severe endometriosis fifteen years ago. I have endometriosis on my uterus, ovaries, and bowels. I had surgery as treatment and I was able to halt everything and be blessed with five children. All of the "Typical severe symptoms" came back. As thought they were pretty pissed off that I stayed either pregnant or nursing.

Recently I have been experiencing stronger pains in my left side. Diagnosis showed that my left ovary was producing very large cysts that rupture on their own, but when they grow and rupture I have fallen over in pain. So...always uncomfortable. This is not how I want to enjoy my very active life.

I am tired of surgery options and there must be another way. I do love the holistic treatment. Evening Primrose Oil and following the diet recommended for women with endometriosis have been great so far, but now I need something else. I think I found something that works! I decided to start running. I thought that if I run it will "shake" my pelvis up a bit and not allow the adhesions to adhere. I will fight back! Guess what? It works.

I started training about 8 months ago. The first six weeks were hard. The pain felt stronger, but I was determined to try anything. How could it hurt? At least I was getting healthier. Amazingly the pain went away. I entered some races to keep me motivated. I actually ran a half marathon and finished. I ran some more and it was great! No Pain! maybe I found something. Could it be this easy?

Well, sadly a death in the family prevented me from running for four weeks. The pain in my side came back. The fatigue, the typical pain when your cycle has a mind of its own and all the other garbage. BUT!!! I will start running again. It really worked! I am a bit nervous about the initial discomfort I get, but maybe it will work again. So Ladies..Maybe you should get some running shoes on. Check with your Dr. first always. Here's to the sisterhood of fighting back!!! 

United States

Oct 2007

Since having my daughter 3 (almost 4) years ago- I have had low back pain during my menstrual cycle (from time of ovulation until menstruating.) In the past year, this pain has gotten a whole lot worse. It is to the point where the pain is almost unbearable at times. For the past year and a half, my husband and I have been trying to have another child. We have been unsuccessful.

My Dr. felt that the symptoms and infertility I was experiencing was due to Endometriosis. So, about 5 months ago, my Dr. went in and did a laparoscopy to look for Endometriosis. To mine and my Drs. shock- she could not find anything.

This was just so surprising because according to her I had the classic symptoms. So, after surgery, we went about a different treatment plan, mainly trying to get me pregnant. She put me on birth control pills for 2 months and then took me off them in hopes this would increase my chances of conceiving. Not only was it not successful but my back pain is still there in full force!

Just a few days ago, I went back to my Dr. to have my yearly exam and she seemed baffled about what to do. She still thinks I have classic endometriosis symptoms. Her new plan is to do some blood work and then possibly put me on clomid and maybe even metformin-- depending on what the blood-work results are. But, if she feels that won't help then her next step is to send me to an infertility specialist and says that he/she may want to do another scope on me to see what they find.

I truly hope she did not miss anything when she did my last scope. I don't want to go through all of that again!! But I don't know how much longer I can deal with this pain!! I feel for anyone going through this because it is AWFUL! 

United States
 Oct 2007

My name is Leah and I am 18 years old. Back in april I had surgery treatment for endometriosis. Things at first seemed great and I felt great for about two months. Now I am back to where I started. The heavy bleeding and the cramps almost everyday are starting to tear me down. I have had cramping since I was 8 years old and would love to feel good. I am about to start college and its hard to be successful when you are forced to stay in bed because you get sick because of your pain. 

Ashley Funk
United States
Nov 2007

Hi, I'm Ashley. I was diagnosed with Endometriosis via laparoscopy when I was 14 years old. After missing several days of school and dedicating my life to my bed, my doctors finally started me for testing. I had a colonoscopy first, and followed was a laparoscopy that found this disease. I was put on depot lupron for 6 months. That shot put me through hell and back literally.

I was going through menopause and developed early osteoporosis signs at the age of 16, which led to more of school being missed. When I was 17 I got pregnant on accident, despite being on 2 types of birth control. That story ended sadly. My baby stopped breathing and developing at 18 weeks. Since then I’ve had multiple doctor changes, more surgeries and even more pills slammed down my throat. Its a never ending story for me. Thanks for listening. 

Angela Neal 

United States
Nov 2007

I was diagnosed with Endometriosis at age 32. At the time I had one daughter and my husband and I wanted a second child. We were trying to conceive to no avail. I decided to try to find out why I was not conceiving and I found a wonderful doctor who had a practice in Staten Island and Manhattan. As soon as he gave me a trans-vaginal sonogram, he saw right away that I had stage 4 endometriosis and I needed surgery.

I had the surgery and I recovered but I was still having a hard time getting pregnant. Some time passed and I found out that my endometriosis had returned the following year and I needed yet another surgery to remove it. Some time after my second surgery I got pregnant but lost the baby at 10 weeks. It was after this that I realized time was running out and apparently it was going to be more difficult for me to conceive naturally.

I tried In-Vitro 3 times. I only made it to retrieval and transfer once; and I only wound up with 1 embryo to transfer. It was a 20% chance of taking. Of course, this did not work. At this point I was 38 yrs old and I was getting sick of the operations, all of the needles and drugs for the In-Vitro, the anxiety and pressure; I decided to stop all Fertility drugs and I decided to give up and just be thankful that I had a healthy daughter.

3 months later, I got pregnant naturally and I had a healthy, beautiful girl at age 39. She is truly a miracle. My doctors told me right before I conceived that I was on the way to Stage 4 endometriosis yet again! But, my doctor never let me give up hope; he always told me that it wasn't impossible it was just going to take me a little longer to conceive. It took me 7 yrs. to have my "little miracle"!! Never give up!! Angela Brookly, NY 

Nov 2007

hi my name is Belinda and I am 22 years old. When I was 15 I started to have very painful periods. My mother used to think that I would put on an act to get out of going to school, until one day when I just could not move from the pain. I first went to the doctors when I was 17. The doctor did some tests and found that my iron, b12 and folic acid levels were very low. He then gave me tablets and b12 shots and sent me away telling me that the problem should disappear.

2 months later I was back at the doctors. This continued for about a year. On the last visit to that particular doctor he told me that he thought I was in an abusive relationship and my partner (who I now have been happily married to for almost 2 years now) was trying to control my life and the pain was in my head. He gave me numbers for a counsellor.

One year later I got the confidence to go get a second opinion from another doctor (a lady). After 5 minutes of examining me she told me that she thought a cyst had burst on the outside of my cervix and sent me to a gyno. One very painful operation later they found out that I had endometriosis. The endometriosis had progressed so vigorously that the operation to remove it would in fact make me fully infertile. So there was nothing left to do but try for a baby and hope that I get pregnant.

My partner and I have been trying for about 3 years to fall pregnant with no success. My last visit to the gyno (about 3 months ago) has reviled that, we now have a 35% chance of falling pregnant naturally or with ivf. We are grateful for the fact that we at least have a chance, but it is very hard to be happy when the problem could have been fixed in the very early stages. I hope that by sharing my story women my age will have confidence to fight if they feel something is not right and doctors tell them that it is in their heads. Do something before it is too late. 

C Barr
United Kingdom
Nov 2007

Coming from a family where illness is not really allowed, finding out I had endometriosis was a long battle. I moved away to another city when I was 18 to go to university. When I was 19 and living with three house-mates, I woke up one morning with a feeling in my stomach which meant it must be that time of the month. "Never mind" I thought and got out of bed.

I never did make it to my lectures that day, getting no further than the bathroom for the next few hours. Whilst walking upstairs to the bathroom I collapsed in pain and started burning up. It was an awful experience; I didn't know what was wrong. My house mates found me in a bit of a mess in the bathroom. They plied me with painkillers and called the Dr. The Dr didn't feel I warranted a visit - and for that I was pleased, as I was feeling very embarrassed. I was lucky that I discovered Ibuprofen so early into my "endometriosis career", within a few hours the intensity of the pain would begin to die down.

As the years went on my period pain got worse and worse. This was so gradual that I barely noticed the increase. The worst thing was that I wouldn't get any warning; I’d go from feeling normal to lying on the floor, clutching my stomach. At the back of my mind, I dreaded that one day this would happen at work, in a lecture etc. Fortunately it never did.

My mum wasn't too helpful, telling me that this is what it's like being a woman, get used to it! When I returned to my home town after finishing university, I started working and coped fairly well with my period pains, as it was only a couple of days a month that I was unable to function. The rest of the time I felt fine.

It is only in hindsight that I feel this is worth mentioning: For approximately one year, I suffered an intermittent burning pain in my lower stomach which gave me a desperate urge to wee, however I was unable to. I believed this was cystitis and treated it as such. However, my Dr never did find an infection. In 2003 I started working in my dream job, the one I had worked for since I was 16. During the year that I worked in this job, things went from bad to worse. I felt my general health deteriorating.

I felt tired all of the time, stressed and generally a bit rubbish. I'd always have an ache or pain somewhere, a headache, or a cold etc. My period pains continued. The only blessing was that they were regular, so I could generally work around them. Being only 5 foot one" and weighing just 7 and a half stone, I often got comments from friends, work colleagues etc that I was looking a bit skinny and pale etc.

It doesn't matter what I eat or do, I am just this way. Doesn't do much for the self-confidence! One of my best friends had a baby that year. For some reason, I just knew that this would never be me. I always felt that there was something wrong in this respect. During the same year, I had a very bad stomach infection. This caught me out as I was on my way to work when symptoms first arrived! For about two months I had various stomach problems as it was a difficult thing to shift.

Work constantly bugged me to hurry up and come back. At this time I had also applied for another job (even more of a dream job), I got it. Although I felt worried about the state of my health I went for it and started there a few weeks later. It was awful, i couldn't stop going to the loo and this was very humiliating. Over the next couple of years I worked in a few different jobs, all requiring me to treat members of the public as part of the National Health Service.

As my health grew worse, my confidence at work suffered. I got used to not eating and sleeping a lot when not at work, due to pain every time I went to the toilet. This lasted for hours or days afterwards. Sometimes I couldn't go to the loo! I liked those days, for some reason I seemed to feel a bit better and didn't have to worry about dashing off to the loo during client appointments! I'd been to the Drs a few times, had a colonoscopy and an endoscopy but this didn't show any problems. I was told there was nothing wrong with me, and I started to believe I was a hypochondriac!

After some time I started to see the connection between my painful periods and bowel habits. My Dr would not entertain the idea. It wasn't until a couple of years later that the ball finally got rolling. I met my current partner and moved in with him. He saw the state of my health and encouraged me to go to the Dr. As I had moved areas I changed my Dr and they referred me to a gynaecologist. For anyone who doesn't live in the UK, waiting lists are huge here!

In the process of the wait, my partner and I decided we let nature take it's course and hopefully become pregnant. This didn't happen. I really started to wonder now. One year ago, I had a laparoscopy and was diagnosed with endometriosis. One of my ovaries had being pulled downwards and in the wrong direction. I had a chocolate cyst on my ovary and generally everywhere was covered in it! They lasered it at the same time. I was so relieved, that I cried.

At last, someone may believe my pain and those in my live may allow me to be ill. I hoped that now work would stay off my back when I was ill - after all it was a legitimate illness! Since then, I still have a lot of pain and have not become pregnant. My bowels still cause me a lot of problems and my period pains have not improved. I had a period of time (a few months) where things improved and me and my other half had a lovely holiday together.

My sick time at work is horrendous and my social life is non-existent. I am so anxious about going far from home or to important meetings etc. in case the inevitable happens, pain and tummy troubles. My Dr has given me three months to get pregnant (no pressure then!) and if I don't he's referring me back to the gynaecologist - probably for a laparoscopy.

Endometriosis is not just about painful periods. It can change your life. I used to be energetic, riding horses for the most part of my childhood and teenage years. I was ambitious, never needing motivation to pick up a new challenge. I loved socialising, drinking with friends etc. Slowly, this disease has taken this away from me and I am determined to find a new way that I can live my life comfortably.

Perhaps my old lifestyle doesn't fit any more, but my priorities have changed. I hope to have a family, and can see the importance of this as my chances have being marred. I used to think that a career was so important, but now I see that really it's just a job, to pay the bills. The real joys in life are health, family and being comfortable in your own skin. My next goal is to try to come to terms with my diagnosis. I think this will take time but will be worth while. 

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