The Endo Cafe

Biography Page

This page was created to let us know we are not alone in our struggles with endometriosis.
The below biographies have been written by fellow endo sister, with minor editing by myself.

Becky Finley

Hello, my name is Becky Finley. I am the creator of The Endo Cafe. I live in Southern California, USA. I have been married for 25 years to my wonderful husband and I have two boys (adopted biological brothers). Our boys go to a Christian private school that is part homeschooling. Our family is also active in Boy Scouts.

I've always experienced painful and heavy periods and thought it was something I had to put up with. I first found out I had endo when I was 32 yrs. old. An ultra-sound found a solid mass in my pelvic region along with an enlarged ovary. I was scheduled for my first laparotomy on Feb. 15th, 1994. My Gyn at the time told me my case of endo was very bad and he had to remove part of my left ovary. Before the surgery I had struggled greatly with Chronic Fatigue Syndrome (CFS), so much so that I had to quit my job. After my first laparotomy, all traces of the CFS disappeared and I felt great! I went on Lupron a month after the surgery. After 6 months of Lupron my husband and I tried to conceive, but were unsuccessful. We decided to adopt. After finalizing the adoption of our two boys in January 1998, my pain came back full force. Upon ultra-sound it was discovered that I had an ovarian cyst the size of a grapefruit. On top of that, adhesions that had pulled my cervix up inside my pelvic cavity. I opted for a full hysterectomy on June 15th, 1998 at the age of 37. It was a very hard decision.

After surgery I endured 5 months without hormones to kill off any remaining endo. I was very hopeful that the endometriosis was gone, but when my pain came back full force I knew it wasn't. I returned to my Gyn who had been treating me for 7 years through all my endo horrors. I was disappointed when he said that he could not help me. The year 2000 was a very hard year for me as I spent the entire year in terrible pain without pain killer. The pain was so bad that I didn't want to be "me" anymore. I had terrible problems with IBS and my weight dropped down to 99lbs. I went to my GP and pleaded with him to help me. He found that I had blood in my urine, but no infection was detected. He scheduled me for an IVP dye test on my kidneys, which revealed all to be normal. I continued to look for a new gyn doctor, while doing so, I made the decision to go off estrogen completely and take only OTC progesterone cream. It took about a year, but slowly my pain level decreased.

I found a new gyn, who performed cystoscopy and found no trace of endo. She helped me set up a colonoscopy, a CT scan and an MRI. All of which were negative for any endometriosis. I continued to struggle with intermitent low grade pain, bowel problems with bleeding and occasional bladder irritation. In 2001 I caught pnuemonia and was ill for 3 months. I continued to make my way through life on day at a time searching for a doctor to help me. In the year 2006 I was in so much pain I decided to contact Dr. Cook in Northern California. In August 2007, I had laprascopic surgery with Dr. Cook. The surgery confirmed that I did have endometriosis. Dr. Cook and his team removed endo from my small and large bowel as well as my vaginal cuff and pelvic sidewalls. Unfortunately, my sigmoid colon developed a perforation and later ruptured. I called 911 and they took me to the hospital where it was discovered that I had air in my pelvic cavity. They rushed me into surgery to remove all the infection and give me a colostomy. When I came out of surgery I was on a respirator and given a 50/50 chance of survival. My husband and family were devastated. Four days later I woke up and spent another 3 days in ICU until I was moved to a regular room. Internal abcesses developed and had to be surgically removed. I spent a total of 5 weeks in the hospital recovering from sepsis and perotinitis. I also spent time at home receiving IV antibiotics with home nursing care. I ended up losing my sigmoid colon to endometriosis and it took a year to fully recover.

Having a colostomy was not as bad as I thought it would be, especially since I was able to eat and drink better than I had in many years. I was also able to go to the bathroom better than I had in many years. Even so, the part of my colon that was not attached was irritating me and bleeding, so I decided it was time to reverse the colostomy. On October 9, 2008, I reluctantly submitted to surgery with Dr. Mills. The surgery went well, but 4 days after coming home from the hospital, I experienced an intestinal blockage. My husband rushed me to the ER. They took a CT scan inbetween me throwing up and screaming in pain and decided to have a nasogastric tube inserted down my nose and throat and into my stomach. After a day of living with the tube, it was pulled out and I given clear liquids and then milk products. I went home and have been experiencing digestive difficulties ever since. Sometimes the pain is horrible and other times I do okay. I have lost a total of 15 lbs since October 9th because I am not able to eat much (eating causes pain). My doctor has ordered a CT scan in an effort to try and discover the problem. We are hopeful that this problem will resolve itself, but I may be looking at another surgery. My only strength through all of this has been God. "Casting all your care upon Him, for He cares for you." 1 Peter 5:7.

 

My name is Kristy. I'm 30 and I live in Jacksonville, FL. I've lived in FL for 11 years but only 4 here in Jacksonville. My family consists of myself, my mother, and my 11 year old dog Daiquiri. Right now I have no job but am trying to find one as a clerical person for one of the hospitals here in my hometown of Jacksonville. I've had endo since at least 16 but didn't know that this was what I had until I got diagnosed on Aug 8, 1997 at the age of 25. I had my first recurrence of the endo in June of 1999 and my doctor took me back in to the OR to see what was going on in there and she found more endo. This time it was on the right uterosacral ligament whereas with my first laparoscopy in 1997 they only found it around the left ovary and probably the cul-de-sac. The only treatments I've been on during this time are the Pill and Zoladex. While on the Zoladex I was also on addback so that I could protect my already arthritic joints-(that's another story for another time). I had a biopsy of my vagina to see if we could find the endo, but of course it showed no endo and no cancer (good no cancer showed, but bad about the endo not showing). I also have vulvodynia. I've been dealing with that since 1998 but didn't know it and that it had anything to do with the surgery I had on my vulvar area 3 months before my first laparoscopy to diagnose the endo. I got an official diagnosis of vulvodynia 3 months after I had my laparoscopy in 1999. When the problem started in 1998 it was nothing like it is now. My gyn is very, very angry at the family dr for sending me to a urologist when he should have sent me to a gyn. The urologist was the one who did the surgery for me. I have several meds I have to use for the vulvodynia. So how am I doing today? Well, I'm hanging in there, but having to deal with a lot of pain. Luv to all of you. Kristy's Personal Page

I'm Louise Blackstone, I'm 36 yrs old and a stay at home mom of 3. I am the 4th out of 4 girls to have endo in my family. I had my 1st lap in March of 1999, endo was found. Afterwards, I went on 6 months of Lupron, it helped for about 2 months after the last shot. Pain, bleeding came back full force. So had a hyster on June 2000. In April 2001 I had another surgery to remove my left/last ovary. I had major adhesions, and scar tissue, but no endo was found. : ) Right now I am dealing with pain at the scar sight, and knowing that some of the adhesions have come back as well. HUGE HUGS.

I am Kathleen (Kat) I am 52. I live in southern Indiana. I have two daughters, age 30 and 33, and two grandchildren, a boy 4 1/2 and a little girl two months old. I have been married for 34 years. I cut hair on Tuesdays, watch the granchildren Monday, Wednesday and Friday, and do all the other things a wife needs to do the rest of the week. I was told I had endo in 1982, when my family doctor did surgery on me for pain and a mass in my left side. He left me with the impression that everything had been taken care of. Then in 1998, after 8 years of no insurance, I got insurance and went to ob-gyn and he diagnosed me with endo and told me I needed hysterectomy, which he did. He said I had so much endo and adhesions they almost had large intestine blocked. Then in October 2000, I had surgery again and he found more endo and adhesions than at my hysterectomy! This time it was almost blocking my small instestines and the tube going from bladder to kidney. In between these two surgeries, I was on Lupron Depot shots twice. And have taken all kinds of hormones. Currently, I am having colon and bladder problems. I tried biofeedback, but it did not help.

I am Elaine Lenzen. I am 40 years old, married for 11 years, no kids. I live in Minnesota, and my current job is running our busy family owned restaurant. I have had menstrual pain since day one and was incorrectly told I had everything from PID to cramps to an STD. I was finally diagnosed with endo 6 years ago when I went for a fertility work up to try and get pregnant. My first lap in 1995 confirmed I had endo. I had a hysterectomy in 1997, leaving one ovary as I was not ready for the menopause thing just yet. Two years later I had the remaining ovary removed as well as more endo and tons of adhesions, all over the place, especially on the bowel. They did a bowel resection at that time to remove 15 inches of my bowel that was adhered to the back of my belly button. I am currently on HRT and trying to find a happy medium so I don't go completely insane. I take it day by day, some good, some bad.

Hi - my name is Kristi, I have one child and I work for an Industrial Business as a secretary/Billing clerk. I found out in November of 1999 that I had endometriosis via laprascopy. My symptoms included severe back and leg pain, abdominal discomfort and very abnormal periods. I went thru several different doctors before I found one that would perform the lap to see what was causing my pain. After my lap I went on Danazol, then the pain came back and I went to see Dr. Lyons in Atlanta. He suggested a hysterectomy due to the fact that he also thought I had Adenomyosis; let me add that Dr. Lyons and his staff are wonderful. I decided to let my doctor here perform the hysterectomy. Now its been about a year and I still have pain in my lower back and legs, pain around my ovaries (kept my ovaried being I was so young) and just recently started to have severe pain during bowel movements. Love to you ALL!!!

My name is Michelle. I live in Georgia (South of Atlanta). I'm 28 years old and work at a school. I was diagnosed with Endo in 1999 during a second lap but my nightmare began in April 1998. It was determined that I had a cyst on my right ovary slighly larger than a grapefruit and it was removed via lap. It was actually an endometrioma and I didn't have a very intelligent doctor for that surgery to diagnose the endo. My pain returned after one month. My 2nd lap was in June of 1999 when 2 cysts were removed and lots of endo. My diagnosis was confirmed. About 8 months after the lap, my pain had returned to the full scale..... so my ob/gyn sent me to a specialist. I had a laparotomy in June 2000 to remove extensive endo connecting my right ovary to my appendix, as well as endo on the left ovary, uterasacral ligaments, bladder, and an appendectomy, and a presacral neurectomy. It has been a long recovery. My pain returned again and my periods were becoming heavier and more painful. Also I began experiencing problems with endo involving the bladder and bowel again. In July 2001, I began having more pain and lots of blood in my urine during my cycle. My GYN sent me to a Urologist. In September, I had a Cystoscopy which revealed large leisions on my bladder. My most recent surgery was a laparotomy on October 31, 2001. They were to remove all endo on my bladder and elsewhere but there was a surprise. Nothing was on my bladder???? However, he removed endo off my right tube, right ovary, cul-de-sac. So, the mystery continues?

Hi, my name is Missy Graves, I am 30 years old (soon to be 31) and I am a homemaker. I live in Southern Arizona. I have been married for 9 1/2 years and we don't have any real children, but we have our doggies and kitties that are just like children. I was diagnosed with endo when I was 22 years old after my second scope and second Dr. We tried for several months with fertility pills to get pregnant, but nothing worked so I had a laparotomy done to clean out all the endo and straighten things up to give us a better chance to get pregnant, but still nothing worked, so was put on Synarel for six months and finally at the age of 25 we decided that a hysterectomy was in my best interest because of all the pain and problems that I was having. After surgery the Dr told my husband that we had made the best decision because the endo was so bad that there was no way I was ever going to get pregnant nor carry a baby to term if I did. He said that he had never seen endo so bad in all his years practicing. I thought after the hysterectomy that was the end of my endo problems. Since then I have had four more surgeries from endo returning. They have finally figured out that even though I have had a hysterectomy my body is still making as much estrogen as if I still had my ovaries, thus making the endo return. They have put me on some medication called Megace that has kept my endo at bay and I have been doing fine for almost a year and half now!! We are currently on the waiting list to adopt and hoping the phone call will come soon!!

Hi! I'm Becky Akers (aka BoBo). Born and raised in San Antonio, Tx. Age 47 and married for 17 years (this October) but have known my dh for 24 yrs. No kids. 2 grown step-children. I work for a Insurance Company as a Comm. Auto Underwriter. My dad died in 1994(heart attack) and mom in 1999 (cancer). I have 1 brother who is S.A. policeman; 1 half-sister, she works for a day care; and 1 half-brother who is a high school football coach in Sierra Blanca, Texas . I found out I had endo at the age of 27 (1981). On a regular check-up my Gyn found what he thought was a tumor and sent me to a cancer specialist. They put me thru the ringer and did a lap and found the endo. I was then sent to another Ob/Gyn who started me out on Danocrine. Thru the years I have taken synarel, provera and birth control. In April '94, a cyst was found on my right ovary. I had a total hyst in July of '94 at the "young" age of 40. You would have thought the endo would go away but........ In late '99 I started spotting heavily and it became worse and worse. I was sent back to the cancer specialist in July '00. He started me on Teslac which only made the bleeding heavier. Took me off that and started me on Megace. That stopped the bleeding but in Nov.'00 he thought he found tumors...go figure. In Dec.'00, I had another lap (number 5 but who's counting) where he found no tumors...just endo. He took me off of all meds at that time and the bleeding came back with a vengence. In Feb'01, I started taking a "anti-estrogen" pill called Arimidex and the bleeding has stopped. I just went for my 6 month check up and he has found no return of the endo. (Yippie) So that's my bio (the short of it). Oh yeah, I also have my min. schnauzer, Maggie and 2 cats, Gatto and Rudy.

Hi - I'm Sue and I'm 30 years old, married to Steve for 2 1/2 years now. No kids or pets. We live in southeast Michigan. I was diagnosed with endo in 1990 from my one and only lap. I started having bladder problems shortly after. Had a cystoscopy in 1991 & then saw many urologists without diagnosis or improvement. I finally realized just a year or so ago that I have Interstitial Cystitis. I have also had bowell problems for many years also. My main form of treatment for endo was bcp's but went off of those in March, 2000. I have been doing many natural things since then and noticing improvements.

Hi ya girls...I am the Resident Angel.....well with a bent halo...from Vancouver Island Canada...I am 41 going on a 100...I have been married 21 years to my high school sweetheart.....I have 3 teen children, 19yrs young man ..almost 17yr young lady (but thinking she's 25..haha) and my baby...don't let him know I said that ..14yr young man...I am a stay at home Mom...at first by choice but eventually because of health issues....in the past I was a lifeguard/instructor...qualified daycare worker...worked for many home based companies (Aloette-make up; Tina Fiorda clothing; Princess House Crystal; Melalueka products and finally Nikken-magnetic products (which I find really helpful with my pain))...it took me over 17 years of hell before I was diagnosed with endo...I was dxed in Nov. 99...it was amazing how many of us were dxed that year....a rough summary of those 17 years are..zillions of bladder infections, 3 C-sections,hernia surgery, probalby at least a dozen of laps and laparotomies for adhesions..adhesions...adhesions..arghhhh, many cystascopes ...eventually being dxed with IC, hyster(leaving both ovaries),2 yrs later removal of 1 ovary as it had rotted inside, 6 fulgurations for blisters in the bladder, dmso treatments for IC, eventually lap that found endo all over the abdomen including diaphram/liver,bowel,colon,bladder and so on.....you know...there was nothing wrong with me ...stupid %$@#&*(@ docs..heehee...the doc removed as much endo as he could but found it really hard to do on the liver as it was completely covered..then Lupron...arghhh..never again for this chick...the doc hadn't read the literature on it so thought that it wasn't working ...so he double dosed me for 4 months..after 6 months I said enough and told them to go in and remove the last ovary..also asked them to take out the appendix and check the diaphram area...they did all but the diaphram which was causing me much pain..this was last July..went to the only endo specialist we have in our province and she did pain mapping and scope..found zillions of adhesions again..they were very dense in the liver/diaphram area..stupid jerk docs for not checking in july..which lead me to the long drawn out journey of this last year...and you all know that saga...haha...as the stomach churns...lol..I really think we should have a show about us..we are the True Survivors!!!! ...now you know the short of it...haha...and the moral of my story...ALWAYS BELIEVE IN YOURSELF!!!! Do Not allow anyone ...including docs ...say you are not in pain...and fight even if it means seeing many many docs...and always know..that endo sisters are always here for one another...they are the most compassionate bunch of women you will ever find....so hold your chins up high and fight for the cure to this disease...Thank you all for sharing your stories and I hope I didn't put you all to sleep with mine ...love and many healing hugs to you all.

My name is Tina and I am 25 yrs. old, I am married and have one child. I was born and raised in Ohio. I was diagnosed with Endo at age 16, my Ob/Gyn who did the surgery said it was the worst case of Endo she had ever seen. I was then put on Lupron injections for 6 months, I had horrible side effects from the Lupron. I was only 16 years old and having to deal with hot flashes, migraines, bones aching and still in pain. I then went off the Lupron and my Ob/Gyn put me on Megace. It was a little pill I took twice a day everyday, I was on it for 7 years. It helped me tremendously, I was almost pain free the entire 7 years from Endo pain. I then had a bone scan at age 23 and was diagnosed with Osteoporosis in my lower lumbar spine and both of my hips had Osteopenia (the start of Osteoporosis). I had to go off the Megace and I was terrified to be in that kind of pain again. I did ok, my periods weren't too bad especially for not having a period for 7 years. One year later I found out I was pregnant, something I thought would never happen. My husband and I had even been in the adoption process for the past 17 months and were a week away from getting a baby boy, when I found out I was 6 weeks along. I have had to have 2 laporoscopies for my Endo, one at age 16 like I mentioned at the beginning and then another one at age 20. I have also been diagnosed with Interstitial Cystitis aka IC, which is also an incurable disease of the bladder. I have found in reading and coming to the board and many support groups that IC and Endo are related somehow. It doesn't mean you will get it because you have Endo, just some women happen to have both of these diseases.

My name is Melissa, my story, maybe it is not a story, but a nightmare that keeps going. Shortly after I had my daughter I felt a small pain, but I disregarded it as after child birth pains. A few months later I was in a car accident and they kept treating me for back pain from the accident. I still didn't think the pain had anything to do with the accident, but they were the doctors. You see when I was in the accident I was alone, but when the accident happened my first reaction was to reach in my back seat for my daugher (with the seat belt on) and get her out of the car. Well, when I did that I pulled every muscle in my body. So I believed my WONDERFUL doctors for 6 months, I did therapy etc... The pain got so bad I couldn't function! The only way I finally got noticed from my doctors was because of my husband. He took me to the emergency room and demanded they "find out what was wrong"! They tortured me, I had cat scans, hsg, and the wonderful colonoscopy. They released me 3 days later and said, she is fine. Two months later, my husband picks me up out of bed, puts me in the car and drives me to my gyn Doctor. It was amazing, they just opened the doors and let my husband put me on the table. He had a few choice words to say, and he did get results!!! The doctor scheduled a lap. We decided to go with a fertility specialist because they would be more careful with the surgery. They did it and found endo. It was on my ovaries, back of my uterus, colon and cervix. I was so stupid, I though I was cured! What a fool I was, so uneducated! A month later I had the pain again. My husband and I wanted another child, and we knew we had to act fast because the endo was growing stronger. We finally got pregnant. I lost the baby after 3 months. I was devastated, I still am! Well, after I lost the baby the pain of endo came back worse than ever. I couldn't move! One day I was on the floor and my daughter (she was 3) came to me and rubbed my back. It broke my heart, my daughter had to see her Mommy at her weakest! I knew I had to do something, how could I be her Mom if I continued like this. She needed me 100%! I scheduled a hysterectomy. I thought it would solve everything. I dealt with the recovery, hot flashes, mood swings, etc... A couple of months after my surgery I felt the slight signs of pain. They "think" I have an adhesion by my cyatic nerve, so they gave me celebrex to take. It has been 8 months since my hysterectomy, and guess what? IT'S BACK!!!! I have been in pain for the last two days, it is not what it use to be; but it is only a matter of time. So anyway Ladies, that is my story. All this happened in 2 years, and I made some bad decisions. I don't know what to do now. I see no point going back to the doctor. What can they do, they removed everything. It is still there, I don't have the energy to do another surgery. I am still recovering from the hysterectomy.

Hi, I'm Joanell Johnson. I'm 23 years old and live in BC, Canada. I'm not working or going to school right now because of bad Endo pain. I was diagnosed in December 1999. Since then I've been on so many different drugs to try and treat the Endo. I've been on Lupron, Danazol, Continous Birth Control. Out of everything the Lupron helped the most. I hope to one day be able to have some children. I'm just hoping that I don't have to struggle with infertility.

Hi. My name is Kathy and I am so glad I found the endo cafe and all the wonderful ladies here! What a blessing each one is! I am 35 years old and I live in western Pennsylvania with my husband Kirke( the e is silent.) and our two sons, Adam age 13 and Aaron age 10. We have been married for almost 14 years. My guys are three of my greatest blessings! We have 5 cats and 3 ducks ( all outside animals; I am allergic!) and we are looking into getting a dog! Our yard is a busy place! I work full time in an emotional support high school classroom as a teacher's aid. My students are all special blessings and I really enjoy my job! My hobbies include playing the piano, singing, reading and taking long walks. My endo story is very much like many others. It took 15 months from the time of my first office visit to the time of diagnoses. My symptoms started about 4 years ago but I ignored them for the first year. At that point they would come and go and many of my symptoms seemed unrelated to my cycle. As time went on they grew worse and I became frightened. One day at work I had a panic attack that landed me in the ER. I explained my symptoms, which many of them were neurological in nature. After running a few basic tests, I was diagnosed with an axiety/ panic disorder and sent home on Ativan. The next week I saw my GP who sent me right away for an MRI of my brain. They suspected a brain tumor or MS. I was never so frightened in my life! The scan came back clear but I was sent on to a neurologist. He did several tests, all of which came back negative and he referred me to a cardiologist.... nothing was found. My symptoms were primarily numbness and tingling sensations and heart palpitations. I had always had painful periods so that seemed insignificant at this point. I was also getting repeated UTI's and had terrible low back pain. I was then sent to another neurologist who once again found nothing wrong with me. Again I was diagnosed with anxiety and put on antidepressants. I began to think that maybe it was all in my head and I spent 3 months trying to deal with it. During that time things got really bad and I went to a new GP. He became concerned enough to refer me to another cardiologist and a urologist. The cardiologist put me on a 30 day event monitor and found I have sinus tachycardia. I don't need treatment for it right now. He also diagnosed me with guess what?!?! Anxiety!!!! Then I went to the urologist who finally started to find some things! He did several tests including 3 cystoscopies to date. On a CT scan it showed that my uterus was enlarged and I had bilateral ovarian cysts. He referred me right away to my current gyn. I saw him in the fall of 2000 but it still took 6 months to get a diagnoses of endo! I was relieved to finally have an answer to my problems but I had no idea it would continue to get worse! My endo was found in several places including the cul de sac, my right ovary, under the uterosacral ligaments, my lower colon and left fallopian tube. I also have a few adhesions. So far I have turned down the options my dr. has given me: Lupron therapy or a hysterectomy. I am afraid to do either! Sometimes I complain alot but I am very thankful that I was able to have my 2 children before I got this awful disease! I believe that God is always watching over us and that all things work together for our good if we love Him and are obeying Him. I very much believe what Philippians 4:13 says: "I can do all things through Christ who strengthens me." God bless you all!

OK where to start....My name is Lisa. I was 10 when I first got my period, and since then its been a hellish time! I am now 24, married with 2 kids, a lurcher dog (greyhound cross) and another greyhound on the way (he's coming home tomorrow!!!). We adopted him on Tuesday. Anyway, I have possible adenomyosis, not endo, but it is classed as endo of the womb, so the medications are the same hence me being here for advice. I have had bcp's (3 different ones), minipill, mefenamic acid (ponstan), tranexamic acid, mirena coil, norethisterone, all sorts of painkillers and zoladex. Since the zoladex treatment I stopped ovulating, and as the gynae wanted me to have another baby then surgery, we have had to start fertility treatment (clomid at the moment). I am in my second month of clomid now. After the baby is born, I am having a thermal balloon ablation (permanent d+c) and LUNA (severing the nerves to the womb). This should cut down the bleeding and pain, but if it doesnt I will have to have a hysterectomy. That is the only cure for adeno. Both my kids were born by caesarean, as my pelvis is too small to give birth naturally (due to me being a twin, we were squashed up in my mum's womb!). With my first daughter they didnt know this though, and I was induced at 2 weeks overdue, and went through labour for 2 and a half days, then she got distressed and her heart nearly stopped and I had to have an emergency caesarean. She was OK after a night in the special care unit. My daughters are 4 and 6 years old. I dont work at the moment, I was a barmaid until May when my pain got too bad and (cos its a tough job - lifting etc) I couldnt continue. I then worked from home, it was supposed to be a permanent job, but they messed me about and it fizzled out. I'm trained in business admin, and was working from home on my computer as a data input clerk. But now I am one of the undesirables, unemployed! Anyway thats my story, sorry its so boring! xxxx

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