Endometriosis Stories - Page 14

Name: Sharon Nelson
Email: iwunderwot@hotmail.com
Location: United Kingdom
Date: July 2007

Hi, need to talk to someone as I’m at my wits end. Got diagnosed with endo 2004, after being told it was other thing like ibs. Have had pill, acne got worse, taken provera for 3 months which kept it at bay for a while. I have seen several gyne doctors and was inserted with a mirena coil July 2006.Had 3 pain free months, then it came back in nov 2006 with sheer power. Have been in and out of A and E since november, nobody is listening, telling me I have ibs again. In april this year i was in so much pain that i went back to A and E with pain in ovaries back passage, vagina and really bad pains shooting into my spine. They sent me home with pain killers and at my discharge fell over with low blood pressure and ended up in resuscitation. They said I had mass and my bowel was blocked, sent me home with laxatives. May june getting worse pain everywhere, now unable to work and am on antidepressants because of depression. Have now seen gynae urgently and am waiting for another lap to see what’s going on. He suggests a hysterectomy, I don't mind as I’m 40 with 2 children already. Husband is unsupportive, family doesn’t understand. Somebody please email me ASAP as i could use a friend who really knows first hand what I'm going through. thanks Sharon. Oh yeah am also seeing urology as it is very tender around the bladder area.


Name: Sarah Rachel Young
Email: sarahyoung@uwclub.net
Location: United Kingdom
Date: Aug 2007

Well where do I begin still trying to piece it altogether, it must be ten years to date there or there abouts, severe menstrual pain, but thinking it was normal, when really bad making appointment with the doctor (cannot remember how many i have seen)only to be faced with a doctor not actually listening to what i have to say, so many have offered me anti-depressants, said i have been depressed or suffering from fatigue. I actually took myself to a sexual health clinic as a last resort several years ago to find out what was wrong with me??? My husband put through tests as well as myself which was hard, everything was questioned, nothing was found but was told to go back to my doctors.....I have really struggled thinking that okay perhaps i am depressed that is what is wrong with me, nothing else when you have been told this by doctors, people who care about you telling you this you question yourself,,, I have done this over the years so many times, is it me or is the feeling of wanting to pull something out of me normal every month and in between, My own questioning has pulled me down...July 07 I saw a doctor sent me straight away for a laparoscopy. The laparoscopy relieved endo, I don’t know where yet, but does it really matter, it kind of answered my questions. I have two beautiful children two girls, aged 12 and 6 i miscarried with my first twelve years ago (maybe the start of it)but am glad i have got my children before endo took them, I do get angry about the fact it has taken ten years to date to find the cause of my hormone rollercoaster,, even though i have known their has been something not right, I have tortured myself, blaming myself, depression, just accepting that i am not right. But somehow i have kept going

Name: Jessica
Email: jess@chris-mcdevitt.com
Location: United States
Date: Aug 2007

I always had a lot of cramping and blood clots with my period, but everyone just tells you that’s normal. When I was fifteen they told me I might be a candidate for endo and to come back if I kept having pain, and surgery was the only way to diagnose endo. How much I wish I'd gone back then and dealt with it. Right around my 21st birthday I woke up in excruciating pain a few days before my period was due. I couldn't figure out what was wrong, it hurt so bad I couldn't even walk. My mom took me to the emergency room and long story short, a few days later I had a lap done and they found an endometrioma the size of an orange that had ruptured, with pieces of it stuck under my uterus. They put me on Seasonique and after a thousand and one problems with side effects switched me to Femcon Fe. That was March 07. A little over a week ago after intercourse I was in pain again. I'm used to pain here and there during sex, but nothing like that. I couldn't stand up straight. After about an hour it went away, but I made an appointment with my doctor the next day. He sent me for a trans vaginal ultrasound and I went back for the result expecting him to tell me it was just endo pain and we would do a Lupron cycle. Unfortunately I have endometriomas on both ovaries now. The BC isn't working to control the cysts because I have epilepsy and am on medications that lessen its efficacy. He decided to try extremely high doses of Ovcon continuously and check another ultrasound in four weeks, to see if the cyst shrinks. If it doesn't, or if the pain gets unbearable its back to the operating room again, followed by Lurpon for 3-9 months. I feel this is going to be a never ending battle.


Name: Melissa Thompson
Email: mthompson@trnj.com
Location: United States
Date: Aug 2007

This is a different story, but I/we have this site to thank for it. My name is Melissa Thompson, and I too have endo, and struggle to conceive, but if it wasn’t for that, I wouldn’t have found the person who would soon have so much impact on my life... a woman in Canada wrote her story to this site, Lisa Kloberdanz is her name, and her story just made me come to tears, I could feel her pain and misery, and out of the blue, something told me to email this woman and let her know just that, this is not like me by the way, to email a perfect stranger. She posted her story in November of 05, well the email was sent and to my surprise she replied, only to tell me that she has never got any feedback from her story and she was shocked to hear from me...to make this beautiful long story short, we stayed in touch through email, then to instant messaging on the computer to phone calls, ($$$$$) and it was worth every red cent. And I am very proud to say that we plan to meet in person, well we have to, how could we not, oh and did I mention that just 2 days ago my precious friend Lisa just gave birth to twins!!! YES that is right, she did it, she now has a beautiful little boy and girl, and everyone is doing fine. The bond between two women can be very strong, and I always knew this, but we have always had a magic between us, we always know without knowing that one of us needed each other and we have NEVER failed to be there. So this is the positive end to my very good friend’s story and I find it my duty to let everyone know, that if it can happen for Lisa, it can happen for you. Good Luck to all of you in your journeys and I wish you all the luck in the world, and if you can relate to someone and you feel them in their stories they write, let them know, because you may find a best friend in them.
Melissa Thompson


Name: Jillian
Email: jillmoreau@hotmail.com
Canada
Date: Aug 2007

It's been four days since I was finally told I have endometriosis, fibroids and Pelvic inflammatory disease. How did this all happen? I wondered, my gyn. told me I had pid from an std, but with much discussion with my partner and bloodwork, this didn’t add up. I gave birth to my fourth child 8 months ago, and the childbirth was hell. two days later I ended up with an infection caused by left over placenta so a D&C was performed. But at that time, there was no evidence of endo or fibroids in my uterus. It wasnt until March, when I was scheduled to have my tubes tied that something went wrong and changed my life forever. The night before surgery I had agonizing stomach and back pain, the urge to urinate and rapid breathing, I thought I was going to burst or die, so in the ambulance to the hospital I went. A laproscopy was performed, I was sent into ER where they removed an ovarian cyst, took out my right ovary and fallopian tube and forced to take awful intravenous medication. At this time I was told it was only a cyst on the fallopian tube. So I went home a few days later for recovery. Five months past and the pain was still there, I went into emergency every month during my cycle they gave me morphine and sent me home....know one did any tests other than a UTI. finally after researching my symptoms on the computer I decided I wanted my doctor to check for fibroids. As I said my doctor told me a few days ago I had fibroids, endo, pid, HE KNEW ALL ALONG WHAT WAS WRONG!!! so from one bad doctor and months of pain I am so grateful for finding this sight and look forward to cooking with this cookbook for women with endometriosis. I have started taking Estrosense, Vitex and detoxifying teas,I hope everyone of you out there find relief, Good luck. Jillian


Name: Anonymous
Email: killer_talha3@hotmail.com
Location: Pakistan
Date: Aug 2007

I am unmarried lady of 38 years of age. For the last 1 year I was having irregular bleeding p/v. On ultrasound I had left ovarian cyst of about 6x5 cm size with solid nodule inside it. I took tablet Primolut-N 5 mg off and on for my symptoms for the last 2 months I started having pain left lower abdomen. On repeat ultrasound cyst size increased up to 7x6 cm with solid nodule of 1.2 cm inside it. For these complaints I had surgery and my left ovary and tube was removed. According to the surgeon there was a large ovarian cyst of about 10x8 centimeters size with thee tubes twisted around it and it was adherent to the gut. The blood was oozing through the tube. The cyst ruptured during operation. The right side ovary was healthy but tube had few bluish spots on it. The uterus and POD was clear. The H/P report showed endometroma with necrotic tube and about 3cm of ovariant tissue. My symptoms of irregular bleeding P/V still persist. I want advice on following points: Was my surgery correct .What is the post operated treatment and its duration. What is the plan of follow up. What are the chances of recurrence and fertility? However i have again started with Primolut-N.


Name:Melissa Burrows
Email: justask@justaskalocal.com.au
Location: Australia
Date: Aug 2007

Hi there. It’s my first time on one of these sites. Thank god I found it. I am 34 which I never usually admit. I have been sick from my periods on and off for eight to ten years. Over the years I would always end up in emergency rooms and they would never know what was wrong and pat me on the head like a good little blonde girl and give me painkillers and valium and send me home as if I had nothing better to do that day then go the hospital and waste everyone’s time. I continued the indignity of the process over the years until one day I was given free tickets to go and see and meet Pavarotti. I got a group of friends together and one hour before leaving time I was in the hospital and all my friends went without me. This particular visit was a lot like the last where the doctor couldn’t work out what was wrong and acted as though i wanted to be there. I was so angry this time but the anger gave me the cure. Sitting there as angry as what I was finally made me realise all the years of emergency room visits was always on the first day of my period -" how obvious " I hear you say, yes well the doctors certainly don’t pick up things like that. If this experience has taught me anything its that your family and friends can tell you the most and give you the best clues when trying to figure out your illness because they are there watching what you go through. Anyway once I worked out it was the first day of my period I was off armed and ready. I went to my GP and asked for a scan of my pelvic region. I looked at the x-ray request and the information I had given my GP wasn’t on the x-ray request and the clinical notes where really vague so I grabbed a pen and put all my symptoms and what do you know. They found fluid in my fallopian tubes which is a good indicator that you have endo. I went to a gynecologist who was meant to be one of the best. He certainly didn’t have the best bedside manner. I told him of my horrific symptoms that had gone from the days leading up to my period to two weeks, three weeks and now everyday with these symptoms that nearly killed me. I had horrific pain in my abdomen, bowel spasms, WAIT FOR IT- MY GYNAECOLOGIST FOUGHT WITH ME OVER MY BOWEL SPASMS AND CAN YOU BELIEVE SAID THE ENDOMETRIOSIS DOESNT CAUSE BOWEL PROBLEMS. Yes ladies I fought with these men and supposed doctors the whole way along and if I hadn’t I wouldn’t be here today. "TRUST YOURSELF" ALWAYS. So I had an operation my first. The gynecologist was gone by the time I woke up he was off on his holiday and left me a little note which said 'Severe Endometriosis', 'Bowel looked ok'. Well that was a lie right there. When i visited him with my mum two weeks later. He took us through the photos and couldn’t look us in the eye when he said 'it was all over my bowel' and just kept talking. He said it was too severe for him to operate and there was only one person who could do this operation for stage 5 endo which would be a four hour operation. I had it in and on every organ from my intestines down into my bowel, cervic, womb, appendix, etc. By the time I went to the next specialist I was going in and out of emergency every two days. The day I met him I was wheeled in on a wheelchair and had dropped down to 38 kilos. I couldn’t digest food, the pain was incredible, my body would just spasm. I was taking 30 buscopan tablets a day to stop the spasms and doctor where injecting me with buscopan other times. I couldn’t survive without it. Its just over the counter stuff but lifesaving. I had and still have milk coming from my nipples but I've never been pregnant. The sensitivity and mood swings were beyond my wildest imagination and brought on a panic disorder. I was in a really dangerous dark place and had to fight these incompetents all the way. I'm not really as arrogant as I sound but I must admit I am still traumatized by the totally destruction of what I perceived and believed the medical profession to be. I am scared for others who aren’t looking out for themselves or have someone looking out for them and just accept what they are told. After the operation I had amnesia for about a week. The operation was in April. Afterwards I found it strange that they don’t x-ray you to check they have everything out of you. So I went for an x-ray and what did they find a cyst on my ovary. So back to the gyno who said oh that will just leave during your next period. So I am yet to go back to check on it which i will in the coming weeks ready to fight on but supposedly they skinned all my insides as the doctor put it and I was left to now be cured. Well the operation was in April its now September. At the moment I have put on weight- yippee and thank god. I am now 47kg really want to be 55 as weight for me is safety after an operation that big I now know the more weight you have the longer you can last. I have battled this whole time. My hormones have not changed I battle the brain pain and have only recently got a little bit on top of it where I choose to ignore my mind and its extreme sensitivity when I am feeling that way. They may have taken out the endo but they haven’t fixed my hormones. I still have prolactin coming from my nipples and pain like you wouldn’t believe. But for $10,000 which is the cost of my last operation - didn’t have insurance then I have had four good periods since April. I don’t know if it was worth that much for four good periods but then again a lot of wisdom has come from this experience. Just the fact I am breathing I am grateful. The pain used to strike at any moment from December 2006 up to April 2007. It took my life away. I couldn’t go out for coffee. I couldn’t go to movie. I had to be as safe and close to a hospital all the time. I have never experienced an illness like this ever before. I am still battling and trusting my feelings to take me where I need to go for my cure. I keep running into so many women who are going through or have gone through this. How funny I didn’t even know what the word meant a year and a bit ago and now I hear it everywhere. Someone the other day told me she was reading a book about endometriosis- don’t know what the books called yet and she said the disease afflicts women with controlling personalities, who control their partners and the more they control the more the disease grows etc. I practically jumped up and kissed her. She was shocked but I love 'Truth' and I wondered what the thought or personality process was about endometriosis that connected the physical to the mental of this disease and for me control has always been an issue so I found that realization such a relief and a truth that would set me free. I'm sure its not true for everyone but for me it was. During the process my naturopath gave me a tip I have to share with you as it saved me. He got me to put vitamin c on a tampon mixed with a natural hormone treatment he made up and said it would stop the pain immediately and guess what it works.


Name: Katie L.
Email: velvet_branch@yahoo.com
Location: United States
Date: Sept 2007

Where to begin, where to even start this. First, I would like to say I admire all you beautiful and strong women dealing with this horrid disease, and to remember that Endo may take our bodies but it will not take our mind, soul or heart. My name is Katie, I'm 25 and I have Endometriosis. The struggles that come along with this weird word have been hard as all know too well how that is that suffer from Endo. I started my menses when I was 11 years old and ever since then it's been nothing but a rollercoaster and sometimes, a living hell. I dealt with extremely painful menses for four years till my mother finally took my to my first gyno appointment when I was 15. The doctor examined me and felt something he didn't like and set me up for an ultra-sound the next day. Oh joy I thought, my first gyno appointment and this happens, I was scared and didn't know what was going on. I had the ultra-sound and BAM I had a tumor that had crushed my left ovary and needed to be removed ASAP. WHAT!! I couldn't believe it, I was so scared and had no idea what was going on. My doctor told me I needed surgery asap and that he didn't know what type of tumor it was, and that my left ovary was destroyed and needed to be removed as well. So surgery came and went, and it was a Dermoid tumor and now one ovary remains. And I thought that would take care of my painful menses and so forth, boy was I wrong. Periods became more irregular and more painful then I could ever imagine. Over the the next five years I would have surgery after surgery to remove cysts on my remaining ovary, being in so much pain all the time, thinking it was in my head and beginning to think I was going mad. When I turned 20 I decided to change doctors again because I was feeling like I wasn't being helped (this was my 4th doctor so far) And was this one worse then the rest, she was so mean and so heartless. She told me to suck it up and deal with it, that's what periods are supposed to be like. I would tell her that I am now beginning to be in pain all the time and so bad that I would welcome death as a solution. She looked at me as if I had just been released from the mental ward and she almost made me even doubt myself. One day the pain was so bad I had to go find someone else cause I knew something was really really wrong. Went to a new gyno when I was 21 years and he mentioned Endometriosis, Endo-what? I had no idea what this word meant, told me he would like to do a diagnostic lap. And I was on board. When I went into surgery I didnt know what to expect when I woke up, but I didnt expect what happened when I woke up. Apparently it was such a mess inside that he couldn't even do anything. I had so much endo, I had a "frozen pelvis", my bowels had adhesions and endo on them, had an endometrioma, my only remaining fallopian tube had detached and was covered with adhesions.. I was so scared and so frustrated that all this time I had that and no one believe me, made to feel like I was some nutcase when all this time I had this getting worse inside of me. So he sent me to a specialist and they did a laparotomy(sp) He repaired my fallopian tube, removed adhesions, endo, had to have a bowel resection, and so forth. And here I am four years and 7 surgeries later still having problems and still suffering. Was on Lupron, Danazol, Arimidex, Nuvaring, and nothing has helped. The pain is getting so bad it's hard to even function sometimes and to even pull myself together to get out of bed in the morning. Just had surgery again August 8th, and it is September 19th and my pain is still there and never goes away. I have seen numerous doctors, some good, some really really not so good. I am at my wits end right now and don't really know what to do. I am so sick of spending my evenings curled up on the bathroom floor sweating and feeling like I am dying, I am sick of having to try these "treatments" that make you feel worse and that only cover and mask the problem and not help it. I am sick of doctors playing God and making you feel less then human and doubting you. I am sick of not owning my life anymore, of not being in control and feel like I am just a passenger and Endo is the driver. I want my life back, I want to get to a point where I can at least function on a daily basis like a human being again. I no longer want to miss out on life because of this disease. I want to be me again, I want to be Katie. I have hit the point of desperation, and now I am at anger. I am angry that this disease is basically shunned by most the medical society, I am angry that women have to suffer with pain for years before, and if ever, being diagnosed. I am angry that young girls have to suffer with this pain because their doctors are to incompetent to even do what they are being paid to do and that's to be a doctor, to take care of their patients and to do a service to them which we, as the patients, are paying for. They are supposed to be working for us, we shouldn't be under their mercy. I am angry that doctors get a "bonus" or some sort of income for "pimping" new medications that haven't even been approved to treat endo and no efficient tests have been done, and whose side effects are beyond miserable and could cause long-term damage. I am angry that doctors think a hysterectomy and pregnancy cures endo (that one still baffles me). But worst of all I am angry at myself for letting Endo take over my life, making me think death would be better, for letting myself fall into deep sadness. I am not going to become a victim, but I am going to become a fighter and fight for the recognition of this disease in the medical profession and in society. To all you women out there with endo you will be in my prayers and thoughts, love and hugs to you all! I also want to thank my boyfriend Matthew because without his undying love and support I don't know where I'd be. Love you all.. Katie



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