Got diagnosed with endometriosis 2014, 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 a mass and my bowel was blocked, sent me home with laxatives. By June unable to work and am on anti-depressants because of depression. Have now seen gynae urgently and am waiting for another laparoscopy to see what’s going on.
He suggests a hysterectomy, I don't mind as I’m 40 with 2 children already. Husband is not supportive, family doesn't understand.
Sarah Rachel Young
Well where do I begin still trying to piece it altogether, it must be ten years to date, or there about, 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.
July 17 I saw a doctor, sent me straight away for a laparoscopy. The laparoscopy relieved endometriosis, 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 endometriosis ruined my chances.
I do get angry about the fact it has taken ten years to date to find the cause of my hormone roller-coaster, even though I have known there 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.
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 endometriosis and to come back if I kept having pain, and surgery was the only way to diagnose endometriosis. How much I wish I'd gone back then and dealt with it.
Right around my 21st birthday I woke up in excruciating agony 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 laparoscopy 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 having symptoms again.
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.
A touching story how two women, both suffering from endometriosis, became best friends by contacting each other because of the stories submitted here.
This is a different story, but I/we have this site to thank for it. My name is Melissa Thompson, and I too have endometriosis, 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 e-mail a perfect stranger. She posted her story in November of 05, well the e-mail 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.
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 blood-work, 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 endometriosis or fibroids in my uterus. It wasn't 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 laprascopy 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, endometriosis, PID, HE KNEW ALL ALONG WHAT WAS WRONG!!! So from one bad doctor and months of pain I am so grateful for finding this site 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
I am unmarried lady of 38 years of age. For the last 1 year I was having irregular bleeding. 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 centimetres 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 ovarian tissue. My symptoms of irregular bleeding P/V still persist.
A powerful story submitted by Katie - getting her anger with endometriosis off her chest
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 Endometriosis 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 you all know too well.
I started my menses when I was 11 years old and ever since then it's been nothing but a roller-coaster and sometimes, a living hell. I dealt with extremely painful menses for four years till my mother finally took me 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 this one was 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 laparoscopy.
When I went into surgery I didn't know what to expect when I woke up, but I didn't expect what did happened when I woke up. Apparently it was such a mess inside that he couldn't even do anything. I had so much endometriosis, I had a "frozen pelvis", my bowels had adhesions and endometriosis 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, endometriosis, 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 than human and doubting you.
I am sick of not owning my life any more, of not being in control and feel like I am just a passenger and Endometriosis 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 too 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 endometriosis 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 endometriosis (that one still baffles me).
But worst of all I am angry at myself for letting Endometriosis 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 endometriosis 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
Stories Page 15