Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Totally debilitated by endometriosis

by Christina

I remember back in high school, that my pains would be so severe that i would have to miss classes. As years went by I thought it was normal. I had two children, and after that my symptoms have increases also in severity!!

Right now, I have minor issues throughout the month, but as my period gets closer, the more pain I am in.

Before my period, I will start with just a dull ache which will slowly increase over a period of 2 weeks. At that point, my abdominal area is extremely sensitive.

I am unable to have intercourse, it even bothers me to try to "take care of myself". I can't allow for my children to jump on me. It hurts to bend over, wear a belt, sneeze, cough, or even have a bowel movement.

All of these things will send a shooting sharp pain thought my whole abdominal area! I will even have back aches that makes it difficult to sit up.

I will know exactly when my period starts, even if it is in the middle of the night! The pain symptoms become so severe that it feels like I'm in labor all over again (almost every month). I have taken two hydrocodone 10s just to stop crying! I would still be in pain. The severe pain will last between 3-5 days and will radiate half way up my back, and also down into my thighs.

I will just want to stay wrapped up in a heating pad, try to soak in a hot bath, and nothing is seeming to work any more. Its getting to the point where it is making me sick, dizzy (even without meds) and just wanting to lay around curled up.

I do not have insurance because it has gotten to the point where it has effected my work, and I had to miss too much work to try to keep a job. The pain is getting to be way too much for me to handle any more!

I have recently applied for a program called DARS, which helps people with medical problems that effect their job! I have seen two different DRs that say that a hysterectomy would be my best option and that would include removing my ovaries. It is scary, but I am willing to do what I need to make this all stop!

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Help endometriosis warriors get endo classed as a disability

by Brooke
(Mansfield Tennessee)

My painful symptoms have destroyed me mentally. I'm drained, in pain, periods last sometimes over a month which unfortunately has lead to me not working and I am now focusing on helping everyone in my position the best I can.




#recognize #disability #endometriosis #signpetition

Donald Trump: Recognize Endometriosis as a disability in the United States Of America


God bless you!

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Stitch-like pains in ovary areas and extreme bloating

by Niki
(South, UK)

I decided to see my GP after reading information on the signs of ovarian cancer and realising I had a lot of the symptoms listed; I wasn't panicking over it as the leaflet stressed that it could be nothing but that it's best to get checked out.

My symptoms included sharp, stitch-like pains around my right ovary (I'd been having these on and off for a few years, not thought much of them initially but they'd been increasing in frequency), discomfort during sex, extreme bloating and IBS-like symptoms.

With the bloating it had got to the point where I'd be lucky to get one third of the way through an evening meal before my stomach blew up like a rigid balloon; I'd suddenly look 6 months pregnant and would not be able to eat another bite until the bloating subsided (which would normally take a matter of hours). I knew this could not be normal and my husband was becoming increasingly concerned for my health.

So initially, my GP suspected I may have an ovarian cyst and I got booked in for an internal scan. The scan showed a growth on my ovary, then I had another scan maybe a couple of months later and the growth had increased notably in size.

I started seeing a specialist consultant who suggested I may have endometriosis and I had a laparoscopy at the end of December 2011. My laparoscopy op was expected to take around one to one and a half hours but I was operated on for more like three to four hours in the end.

It turned out there was more endometriosis tissue than the surgeons expected and I had 4 incisions instead of two! They had removed 7 - 8cm worth of endometriosis tissue.

Following my laparoscopy my symptoms essentially disappeared. I went on a course of zolaxex injections for a few months, then moved on to the contraceptive pill (Microgynon, or the equivalent unbranded pill had always worked well for me in the past and was probably the reason why my endometriosis had not really developed until after I'd originally come off it).

After maybe 6 months or so of being on the pill I decided to take a break and try to conceive. I'm happy to report that I fell pregnant virtually first time trying - I am now 36 weeks in, a first-time Mum-to-be! Fingers crossed the birth will go as smoothly as the pregnancy has so far, and it would be especially nice if what they say about having children being the closest thing to an endometriosis cure turns out to hold true for me, too.

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Symptoms vary with activity and mood

by Kimberleigh

My endometriosis symptoms include:

* pelvic pain
* mood swings
* bloating
* chest pain
* shoulder pain
* fatigue
* fevers
* pain during intercourse
* rectal pain and bleeding
* nausea and indigestion (that one is recent)

All of these come and go depending on time of month and stress levels. However, shoulder pain is most chronic just before and for about 3 days after my period.

Pelvic pain is usually just before and during a period and the rectal bleeding is normally just before a period. With all the bleeding it's safe to say I do take iron tablets otherwise I become anaemic very quickly!

I have found that taking Melatonin, Zinc, Iron, Vit B6 and Vit C do help my symptoms. I haven't taken them all in the past 3 months and have noticed a worsening in my pain. Melatonin is a big help to reduce inflammation.

I'm getting back into a gym routine now which I find helps relieve some pain and, due to only having one kidney, I drink at least a litre and a half of water a day and try to stick to only two cups of coffee. A big cut back for someone who used to drink 10 cups a day!

Unfortunately, what works for me may not work for you. But, you have to try things and see what your body responds to.

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Possible Endometriosis? - diagnosed as "dysfunctional"


I am 21 years old and have been on 10 different types of birth control over the last 3 years- none of which have worked. Even "dangerous" amounts of hormones that my physician prescribed as an ultimate attempt.

I've always had severe pain with periods, but the time span of them is what kills me. An average period for me lasts 10-13 days on birth control. Without it, I don't stop. There are frequent clots and it is always heavy. It is not consistent and does not follow a strict 28 day pattern even with the contraceptives. At the beginning of each period I have severe cramps and bloating and the discharge is nearly black- like, forgive me, "older" blood. It's honestly gross.

I have had a pelvic exam twice, but both times the nurse had to restrain me because it hurts so bad. I always cry.

I've also had a vaginal ultrasound (that was also extremely painful) that showed no signs of any trouble.

My latest symptoms are unusual exhaustion- I want to sleep all the time. The one that worries me, though, is my bladder. One minute I am fine and the next I HAVE to go and often don't make it to the toilet on time. Earlier this year I even woke up to having wet my bed. It was so embarrassing and made me feel upset for a week or so despite nobody else knowing about the incident.

Is this just dysfunction periods? Or could it be endometriosis? I have very little knowledge about the medical world myself.

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Chronic pain everyday.

by Kait
(Pensacola, Florida, United States )

I have had symptoms since I started my period when I was 12. Symptoms have increased with age and I have had 2 laparoscopic surgeries to remove it.

Main symptoms are:

- constant headaches and migraines
- jaw and gum pain
- hiccups almost everyday
- mouth ulcers
- neck pain
- shoulder pain
- chest pains stabbing under boob on side of boob, feels like reflux
- hurts to deep breathe
- extreme bloating
- stabbing behind bellybutton
- ovary pain both sides but mainly the left side
- cramping without period
- right arm numbness and pain (stabbing)
- stabbing up anus, throbbing/ pressure in anus
- stabbing in vagina
- shooting pain down thighs, inner groin
- nausea
- vomiting 15+ hours at a time
- painful intercourse during and after

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My Pain is worse in the morning and at night

by Isabel

I am 17 years old and have been experiencing endometriosis pains ever since I was nine years old. I have not yet been diagnosed but I found out about the disease a week ago and I'm shocked how much it resembles my symptoms!

I've noticed I experience the pain more often at night and in the morning and it lasts about three hours.

I experience pain after urination which causes extreme stinging that feels like I have to urinate but nothing comes out. I also experience a stabbing cramp in the left side of my abdomen and it carries to my lower back, making it really hard to walk or do any other physical activity.

I also have issues of constipation usually a week before my period and then I have episodes of diarrhoea as well.

My doctors have mentioned dietary issues, dehydration, and ovary cysts but the pain comes and goes as it pleases making it hard to tell what is causing it.

I have the pain chronically throughout the month but it is worse before and during the beginning of my period. 'm just done with living day by day like this and would like to know if what I am experiencing is endometriosis so I can figure out how to cope with it because it causes me stress, anxiety, and fatigue as well. What do I do?

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Endometriosis you are not alone.

by Emily
(San Marcos, CA )

I am a 21 year old female and I was diagnosed with endometriosis and interstitial cystitis or IC in 2010 through an exploratory laparoscopy.

I went through years and years of agony and horrible periods without any answer from my doctors. No one could understand what was wrong.

I had cat scans, MRIs, ultrasounds, you name it but there is no proof that endometriosis can always be seen on those tests.

My doctor finally agreed it was time for surgery. I have even been told by a doctor that I was crazy and all the symptoms were just in my head. This was vindication for the months I spent in bed writhing in agony every day and for all the people who didn't believe me.

My doctor found a lesion on the back of my uterus or my cul de sac which explains all the lower back aches I had been feeling. This lower back pain was unlike any muscle cramps, it was inside and drove me nuts.

My doctor also found some other lesions and got rid of them. My bladder was covered in haemorrhages which is consistent with IC.

After the surgery I had months of relief which was wonderful. Of course the symptoms came back eventually. I suffer from chronic lower back pain, overall abdominal pain, horrible periods, bladder urgency, as well as IBS.

I am now on the lupron depo injection which is nice because it took away my periods but I still suffer from pain.

I understand how it feels to be trapped in your own body. People are not understanding of these diseases because it is hard to explain to someone what it feels like unless they have felt it themselves.

There are many days that I cry and feel down because I don't see an end in sight. But I try to remember that I am alive and that I can get through this. I do have a good life and loving people in it who do support me. Ignore the people who don't support you, you don't need those type of people in your life.

I want to raise awareness of these diseases and I want to say to all the other women out there who feel hopeless and lost, that you can do this!

You are beautiful and strong, stronger than you think. Don't give up. There are many others out there who do know how you feel and you are NOT alone.

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Cramps and Bleeding-Scheduling my 2nd Laparoscopy

by Breanna C.
(Los Angeles )

This all started when I turned 14 (when my period first started-late bloomer). I always had horrible cramps, vomiting, nausea. But the pain didn't start to interfere with my life until I turned 16.

I would have a period every two weeks and the worst cramping (frequent ER visitor-as I thought I was dying). Each and every time I went to the ER they would give me medication for the pain and nausea (Zofran-which I still take now).

My GP finally referred me to a GYNO after consistently telling me in was GI issues. In Oct 2014 I received my first laparoscopy where my GYNO then found the endometriosis (behind my uterus, ovaries -primarily the left side, and in my pelvic wall). All confirming what it was all along.

Mind you before this time I was given birth control, which helped to regulate my period but did not help with the nausea or cramping much.

After the surgery I was then told to take the birth control actively with no placebo pills. It worked for all of 2015 but in 2016 and currently it has gone back to how it was pre-surgery.

In the past year I have had a lot of bowel issues now (blood in stool), my GP sent me to a GI doctor and we scheduled a colonoscopy (came back completely clear-FRUSTRATING).

This was very frustrating because I was more than sure that it was actually the GI problems. So now I am waiting to schedule my laparoscopy surgery in the hopes the endometriosis is removed and I am alleviated from the pain. Have any of you had similar situations?

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Diagnosed stage 4 endometriosis

by Kelly

Kelly has recently been diagnosed with Stage 4 endometriosis and feeling very distressed, which is understandable.

Where do I start?, I am 37 and have never had any pain to speak of, but have always suffered with extreme fatigue. I could sleep on a clothes line!!!.....

This year, back in July my periods (out of the blue) became extremely heavy and long, at one point I had to contact the out if hours hospital as I had gone through at least 100 sanitary towels in 8 days! and because of this I was referred for an internal scan.

The scan showed what they thought was a cyst on my ovary, I was told that I would need a laparoscopy to remove the cyst.

My parents offered to pay for me to go private as the NHS waiting list was over 3 months and owing to my heavy periods they wanted to get me an appointment ASAP.

I had my laparoscopy in July 2012, the laparoscopy itself went well, but on waking I was told that the consultant had found not only a cyst, but severe stage 4 endometriosis. I hadn't a clue what this was so did my research.

My bowel, uterus, rectum, Pouch of Douglas, bladder, left ovary and tubes were ALL stuck together. The consultant couldn't understand how I wasn't in agony!

I have just had my second laparoscopy on 10 December where my consultant managed to remove 90 % of the endometriosis. Once my period returns (I have been on injections for the past 6 months to put me in a temporary menopause to stop the endometriosis growing), I can try again for a family.

My husband and I have suffered 3 miscarriages so are hopeful that this recent operation will have worked.

I urge anyone that feels that "something just isn't right" to get it checked out. I have probably had endometriosis since I was a teenager with no symptoms, so if you have any problems with heavy periods or fatigue get it checked out!

Sorry to have rambled, but this has all been a shock for me so just needed to share my experience!

I'm hoping that the more we speak out about this awful disease the more we will begin to understand what we can do to cope with it!!

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Endometriosis Has Taken Over My Life

by Erin
(Colorado, USA)

Thank you so much for this site! I thought I was alone. I was dignosed with endo after a miscarriage through transvaginal ultrasound.

I was told I had "mild" endo but it doesn't feel like that anymore. I used to dread my periods but now every day is a struggle.

I have all the symptoms that have been mentioned: lower back pain, horrible cramps, bloating, radiation of pain to legs, diarrhea, migraines, fatigue. I'm so tired battling this disease.

I've had endo probably since I was 13 (puberty) but I just didn't know it until my mid-30's. Endo is messing with my marriage, my job, school, the things I used to love I can no longer do. I'd rather stay at home.

I wanted children but was told that with endometriosis, my odds are less than 5%. I'm now 43 and need relief. I made an appt with my OBGYN to get more help and to seek dianostic and surgical options because the endo is getting worse and I don't want to live like this anymore.

Any advice on whether I should just get a full or partial hysterectomy? I'm just tired of hurting and endo taking over my life.😥


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Secondary infertility? Passing tissue every cycle..

by Loretta Martin
(Virginia, USA)

I tried to get pregnant for over a year with my daughter, she's now almost 2 years old. Me and my husband have been trying for our 2nd baby since the birth of our daughter. .so about 2 years.

I have extremely painful debilitating periods where I pass tissue. Its usually grey matter about 3-4 inches long. At first I thought it was a miscarriage. .but almost every month???

I went to the Er years ago for abdominal pain. and they said it might be endometriosis, ultrasounds have showed cysts. Haven't had laparoscopy.

I feel like I'm experiencing secondary infertility possibly due to endo. It is very depressing to me and i can't go see a gyno rn. Just wondering if anyone can relate or has experienced something similar.

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