Hi! I first heard the word endometriosis during a routine gyn visit in 2005, complaining from pain during sex. At the time the doctor said I should write it down (I had no idea what it was!), look it up on the internet(!), decide what I wanted to do and let him know ... how horrid! Deciding - do I want a laparoscopy or drugs or what?
3 years later, I'm due for a second laparoscopy, the ache hasn't stopped for a day! My husband has finally (after 3 years!) started to consider that I'm not making all of this up, although the first laparoscopy did find endometriosis, cysts and the usual. I'm not giving up on him though and will make him read the Endometriosis Sourcebook some day ... and hopefully understand what life has been like for years on end ... thanks for reading my story everyone! Hope you feel relatively pain-free!
Had three miscarriages
My story goes back many years....as a matter of fact it will be exactly 20 years ago. I am 34 years old and just had my first laparoscopy last month. I was told I had level 2 endometriosis by my fertility specialist after the surgery. I was also told I had some adhesions and fibroids were found. I have not had my post-op yet, but have already scheduled by 2nd surgery in a couple of weeks. My specialist said that he needs to do laser surgery to remove the endometriosis.
He said it seems to be minor, and it may be the reason behind me having 3 miscarriages in the past year. I knew I had issues way back. My first period was painful and the ones to follow would only get worse.
I had seen specialists when I was 16 yrs old because I would complain about how much agony I would always be in. I had heavy, painful periods that would cause me to throw up, faint and be hunched over for hours and eventually be driven to the hospital by my parents or friends.
I remember the only relief I would get was to take Tylenol 3's.....that would only be because the pills would knock me right out! I had a gyno once tell my mom that my right ovary was useless (I was 17 yrs old) and that she wanted to remove it. I had huge cysts back in the day. I experienced all this up till I was 18....then I was put on several different kinds of birth control as they were trying to minimize the pain and the flow.
Nothing seemed to have really worked; it only gave me a few months relief here and there. I had a family doctor who then said to get off the birth control as soon as possible as he believed I had endometriosis and that birth control was not good to be on.
He said the only real cure would be to get pregnant as soon as I could before it was too late. I was 20, not married and no intentions of getting pregnant. That was the only advice I got.
I did not get referred to anyone, no surgeries, no nothing. So, I trekked on, dealt with the monthly agonies and hospital visits and here I am today. I always knew I would have issues with getting pregnant and I told my husband even before we got married that there would be issues. I just never thought it would be this bad.
My specialist is still not that convinced that it is the endometriosis that is causing my miscarriages but he said we will get to the bottom of things. I just hope I am not poked and prodded and given medication after medication just to be told, "Sorry, we can't help you". It is scary, and I too just keep the faith and pray that it will all end up ok.
Some stories that I have read do frighten me a bit, but I get passed it and hope that it will all be ok. I have my husband who is supportive, he stands by me even though I complain of the agony, have issues with intercourse (painful) and have had 3 miscarriages. I am lucky in that way. I am now waiting for my post op appointment which is coming up in a week and a half and am hoping the doctor will say they can help me! We shall see. Good luck to all!
So, I stumbled onto this site.. After 7 years of fighting with Doctors left, right, and center... I am trying to find a doctor that specializes in endometriosis... I have endometriosis... I was diagnosed with it over 4 years ago... Their "fix" was hysterectomy and everything would be normal again. RIIIIIIIIGHT!!!!...
I was 25 when I had my hysterectomy... I fought with ER doctors for 3 years before that, stating that there was something wrong with me. I got told it was all in my head. Until one day I started to discharge stool from my vagina. The doctor's finally did something. I went from test to test. Until my hysterectomy... They left my ovaries.. Although I was told that my left ovary was filled with cysts and adhesions.
So, now 3 years after my hysterectomy I am still in lots of agony; stomach still swells out like I'm 9 months pregnant. No energy and countless of other things. It's now just harder for a doctor to actually do something about it. I'm waiting on my GYN who is waiting on my Urologist, who is waiting on a general surgeon's notes, who’s waiting on test results.
In so much distress that I dunno what to do with myself, none of my doctor's will see him until 2 months down the road when they have time. So, I went to the ER one day. I got told that there is nothing wrong with me. That I am having phantom pains from losing my uterus.
And then handed me a prescription for an anti-depressant and YES, I'm not joking around, he did not even look at anything, did not touch my abdomen or anything. I have had all test results that you can even come up with I have had done. I'm at the end of my rope, any suggestions on a doctor that is good for this...
My story is so similar to those I have been reading today, I just came across your site and so far have found it wonderful! I live in the West Highlands of Scotland, and even here there is a large number of endometriosis sufferers! I had suffered from heavy and very painful periods since I started when I was 11 years old - I always thought that was just how it was!
As time went on I understood it wasn't meant to be that bad! I went on the pill at 17 and was on it for 11 years, I still had the horrendous discomfort and heavy bleeding until eventually I had a huge argument with my GP - she didn’t want me to come off the pill as 'you will just get pregnant' she said!
Never mind that I was just about to marry and perhaps that was the idea! After being off the pill for about a year things got to the point where I couldn’t cope with the painful symptoms, it was starting up to a week before and increasing to the point through my period where I was off work and vomiting with the pain and lasting up to and after I ovulated, I reckon I had about 5 clear days a month when I was 'normal'.
Finally I was referred to the consultant and after a wait of 9 months I saw her, she was brilliant and suggested for the first time that I may have endometriosis! She prescribed me tranexamic acid for the pain, those didn’t work but then we tried mefanamic acid which really helps!
A further 9 months later I had a laparoscopy and endometriosis was confirmed along with a cyst the size of an orange on my right ovary, there were adhesions all on the right side attached to my diaphragm and bowel plus a few smaller cysts.
The consultant was honest and said that I may not conceive naturally and may have to get IVF. She was also keen to remove the cyst and my right ovary. I was booked in for the operation 3 months later but the cyst burst a month before the surgery! It was incredibly painful and scary, after a scan it showed the cyst had shrunk to 4cm, the operation was cancelled!
I was asked to try a new treatment, known as 'triptorelin' or 'decapeptyl', monthly injections for 6 months instead of future surgery. This is usually used to treat prostate cancer; it causes a shutdown in hormone production and creates a mini menopause - also the symptoms! Weight gain, hot flushes, hellish mood swings! It was very hard but I had nearly 2 years symptom free after it! And I would recommend it!
Since then the symptoms have recurred, but not as bad! The cysts are still there and I’ve just been in hospital again when one burst, but I’m hopeful! I’m trying the diet and it’s amazing! I think the single biggest thing you can do is find out what you can and get your doctor to listen!
I was lucky I had a consultant willing to try something new and for me it has worked well for a while! Also knowing there are others out there going through the same means you feel less alone and there is hope! Heather xxx
Been to 5 doctors in the past two months
By the time I was 12 my mother had already taken me to 3 Dr’s about my hormones and acne and severe painful sensations in my pelvic area. Growing up in a small town wasn't helpful either there were only a limited amount of Doctors my poor mother could take me to. Every Dr told my mother that once I started my period my body would start to regulate my hormones and the pain would also subside since they were growing pains after all.
I finally did start my period when I was 14yrs but with even more pelvic pain. My mother and father did not have a lot of money so my mother attributed my agony to menstrual cramps. I went on like this for years never having a regular period and being on birth control made me feel like an outsider esp. when I didn’t even have a boyfriend.
Sometimes I would skip my period for 1-2 years at a time. When I was 24, working as a general manager for a burrito place in 2005, I was sent home with a severe ache in my left side and bottom right side of my stomach. I did not go to the ER thinking that it was just a bad case of gas. Two days later I had made a Mexican buffet for my husband’s family and later that night, in fact right after being intimate with my husband, was hit with excruciating pain in my gut.
I threw up and had diarrhoea and after each there was still no relief. My husband and mother demanded that he take me to the ER and finally after hearing my mother say "unless you want to her to die on the couch!" I finally went in.
Long story short, I had internal bleeding from an ectopic pregnancy and was rushed to surgery to save my life. Three weeks went by and I had a follow up with the gyno Dr who operated on me. During the consultation he advised me that he found endometriosis and that he did have to remove my right fallopian tube and some of the endometriosis on my uterus.
He advised me that I would have to stay on BC to regulate my periods and if me and my husband wanted to have children then I would have lots of problems and most likely would have to monitor my ovulating time to get pregnant. Even if I did get pregnant I would have lots of problems staying pregnant and be high risk.
Now I am 27 years old and having severe cramping, still having irregular periods and as the months go by am having to stay home in bed with pain meds and heating pad with no relief. My gyno is over booked as well as other obgyn and oncologist here and have not been treated for my endometriosis. I have horrible nausea and lower back ache and my stomach is always in knots and is in excruciating pain all of the time.
I live with the painful symptoms everyday, but when worse comes to worse I am not even able to eat, sleep, go to work or even go to the bathroom without having unreal pain. My husband is wonderful and takes care of me. I feel really bad because I have missed so much work and have had my husband miss work to take care of my when I am not able to get out of bed.
The worse thing is that my husband at age 24 was diagnosed with MS, and we have to take turns taking care of each other. He is currently in relapsing remitting MS and this year has already not been good to us. If anyone has any ideas on home treatments I can try I would greatly appreciate it. I have been looking for others who share the same feelings that I have.
These past few months I have been very emotional and depressed. I feel alone and unwanted even though my husband reassures me every chance he gets. I have been to 5 doctors in the past 2 months and I feel like the dr's think I’m going crazy. I never knew that hormones help feed endometriosis and am glad I never started the hormone treatments.
But is there a specific type of dr or specialist I need to go see. I have good insurance and have a reg. gyno. but I need help with this pain. Thanks to all the women who wish to share their feelings with us who understand your suffering.
Please I need someone's help. For the last 4 years I have bad menstrual cramps. I throw up for hours, I have extreme, extreme bad menstrual cramps, I can't move, I can't eat, I can't drink, I can't smell food or think of it, cause it makes me nauseous. I can't even take a pill to get rid of the pain and even if I do it does not work because of how bad my cramps are, it really makes me want to kill myself, even when my period is not on, I still feel the symptoms during other times of the month.
Please please, please help me with this, I can’t take it any more I’m begging. When I get my period I miss out on school, work, social events, etc. this is ruining my life.
The agony of endometriosis has disrupted my life - during the pain attack I cannot put any weight on my legs - I can't even grimace or move - all I can do is clench up my fists and move my head side to side - in the latest attack, after about several hours, I managed to crawl out to the kitchen to pop some Panadol and Dyclofinac pills - took ages to get back to bed - and the tablets did nothing to relieve the distress.
The following day it felt as though I had a heavy weight in my low abdomen - there has been excruciating pain to have a bowel movement or to empty my bladder and all the time I feel fatigued and as though I am 'coming down with a cold'.
This all begins up to 3-5 days before menstruation, at ovulation and during menstruation. I will have a really bad case of the runs in the lead up to a very severe attack and incredibly bad back ache to match. I try to hide away during these times, make up excuses to get off work and miss lectures at Uni. I have been referred to the gyne doc at the local hospital and am waiting for that day. My periods will be heavier than I am used to and spotting will appear several days after my period stops - and some cramping will come back.
I dread periods and I have gotten to the point where I want my uterus taken out. I have a bright future ahead but this disabling problem could jeopardize that. Just the pain is the biggest issue for me.
I'm only 22 years old and I was diagnosed with this painful disease last year. I always had normal periods with little or no pain. At 19 this all changed. I went from “oh my period is here" to "oh my god I can’t stand up from the pain". At first I didn’t think anything of it. I complained to my friends and family about it and I just never did anything about it.
I went to the GYN for the first time in my life when I was 21! (yes I know, terrible) I told her about my change in cramps and she totally ignored by complaint and simply put me on BC. My pain vanished!!!! I was happy. I then went to another GYN for another problem I was having (infection) and I told her I was spotting here and there before my period. She decided to do an ultrasound on me to check for cysts. And that is where it all began.
She told me I had bilateral cysts, sent me for CT scans and MRI's. The mri's showed 3 cysts, 2 on my right ovary and 1 on the left consistent with endometriomas! She told me it was something I’d have forever and nothing to do about it but take pain meds! I was stunned that no treatment options were offered so I sought another opinion. This new Dr told me I needed to go for a laparoscopy, which is taking place in about 3 weeks. I'm so scared & nervous. I've been trying to find reasons to cancel it.
I don’t really have much pain since I’ve been on birth control but I do have awful constipation which I believe is related to endometriosis. I have a few questions if some of you could answer. How painful is the post op? Do I gain weight from the surgery? How long will I be bloated for? Are the scars very noticeable? Thank you all.