I just found out I have endometriosis; I’m not sure what stage it’s in until I have the laparoscopic procedure done to find out more info. My question is, who else has endometriosis? What are your symptoms? What stage? Did you have surgery? I’m really nervous; the amount of pain I’ve been in the last 11 days is nothing like I’ve experienced since childbirth! I’d love some stories on your outcomes!
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I got diagnosed two years ago with it. Thankfully not too bad to where I need surgery. I just live with the constant stabbing pain in my vagina. But over all I have very heavy periods where I have to wear pads and tampons and still bleed through everything. And I have huge blood clots that make me slightly anemic.
I was diagnosed with stage 2 endometriosis. I’ve battled all my life with excruciating period pains to the point where I would need to lay in a ball while I wait for the pain meds to kick in. My PMS was absolutely terrible. I had a laparoscopic surgery in 2019 to diagnose me. It affected my fertility and everything. I’m so blessed with my beautiful daughter now. You are welcome to inbox me if u want to chat about the surgery and procedure and well anything . Stay strong. 
I found out Monday after an ER visit that I have endometriosis. I haven’t had a period in over a year and it appeared out of no where. I have PCOS as well and irregular periods are normal, so I didn’t worry to much about it.
I INSTANTLY began bleeding extremely heavy, multiple products used an hour, the biggest clots passed I have ever seen and the pain was excruciating. It felt like my insides were being ripped out. I had migraines every single day, extreme fatigue, weakness and some dizziness. I also had a lot of pain in my lower back. I have to have an endometrial biopsy on the 11th of June to find out the stage, and about surgery.
Constant pain, horrible heavy periods. Ended up having several procedures to try and ease the symptoms, none were successful and had to have a hysterectomy.
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Massive pain almost every day. Periods were like I had given birth again. Idk what stage I was but it was pretty bad and went for a few years before they did a hot water ablation. It had spread to my ovaries as well. The ablation didn’t work so a year later I had to have a hysterectomy at 27. Life was so much better after it was done. I couldn’t use tampons anymore kuz the pain was so bad and sex was horrible too. During my periods all I could do was lay in bed or sit in a hot bath. I was lucky if I had a few pain free days out of the month
i’ve never been “officially” diagnosed because they told me the only way to get a diagnosis would be thru a surgery but they did do an ultrasound and didn’t like what they saw in regards to endometriosis. i’ve been on the pill since i got my first period at like 13. my period was so heavy and i had such extreme cramps and i didn’t stop for like 2 months. they told me it was more than likely that i had beginning signs and early stages because it’s hereditary and my family has a history of endometriosis.
cramps so bad I coukd not stand up and heavy periods I had full hysterectomy best thing I ever did
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I had really painfull heavy periods pain passing urine and bowls I had mine had fused bowl and bladder to wall of womb they done laser to remove no pain after xx
I had a hysterectomy and due to many adhesions and scaring I still have terrible pain! I just got on disability since I had a bowel obstruction due to adhesions and pain
I’ve had surgery twice for it. First time was stage 1 and second time was stage 3. My symptoms were constant pain, heavy period, painful urination, constipation, pain during sex. The first time is was diagnosed with it I was 15, the pain was so bad the school was getting ready to lock my grandmother up because I was missing so many days. The second flair up, I missed a month and a half of work. I was begging to die, the pain was so bad.
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I have endometriosis also. I am meeting my doc next Wednesday for a plan. I’m scared…
what does this have to do with nails???
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I just had a hysterectomy 8 weeks ago due to endometriosis. Hoping you have a some relief soon!!
I thought this group was about nails. I’m seeing too many threads on abuse, reproductive problems and relationships issues.
Go have your nails done
I have it I have to get it fixed so I can try and have some babies
Katherine Short maybe some comments might be helpful idk
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Hi I t caused me a lot of problems. Extreme pain. I had 5 laparoscopic surgeries. They wanted me to have a hysterectomy.
I said no. I wanted one more child. Said chances were slim.
Did get pregnant and lost it. Eventually had another child.
Went on Depo shot and it helped me. Kept me from having a period for 20 years.
Then went thru menopause. Started having severe pains. Had another laparoscopic surgery and they found endometriosis. Shocked the Dr. She went ahead and did a hysterectomy!!
She wasn’t sure if she got all of it.
Took a good while to recover.
Good luck. Yours may not be so involved.
I found out I had it in Feb when i got my tubes tied. Idk what stage. But my periods have been horrible my whole life. Not until after my surgery are my periods unimaginably painful. Typical pms, heavy/med flow, fatigue that I can’t shake for days into my cycle, cant sleep at night, odd painful cramping outside of my period. Since we didn’t know i had it until i was under i would have to go back in and discuss options to help manage my symptoms.
It was on my tubes (now removed) my ovaries, and my uterus.
Finally diagnosed in February after 11 years of fighting doctors that it wasn’t all in my head or normal.
Stage unknown as I’m awaiting exploratory to see how far it has spread.
Daily pelvic pain. Varies in intensity and description.
heavy, unpredictable periods. Spotting in between periods.
Night sweats.
Extreme nausea at times.
Bloating.
Sciatica & lower back pain
Upper thigh pain
And the list goes on and on and on.
In the meantime, I’ve changed my diet. As much as I love fried, unhealthy things…I’ve cut down my consumption and it seems to help with flare up pain. Learned to take it easy on “bad days”.
Search facebook for Nancy’s Nook Endometriosis Education. There is a huge amount of information on this subject
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I had total utereus removed that is endometrior. Is a small tumor grown inside uterus. U will experience heavy bleeding and came out in blood clot.
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The pain was unbearable I had a full hysterectomy at age 22 I had 3 children, my doctor had no idea how I even birthed them cause I had such a bad case of endometriosis. I’m now 42 never had any issues in the past 20 years it was the best choice I ever made getting the hysterectomy. Good luck to ya!
I was diagnosed with Endo almost 18 years ago. At that time I had just given birth about 4 months prior and had been in so much pain. Like in the fetal position crying for hours and days. After I was diagnosed the dr told me the chances of every having more children was nearly out of the question. I was heartbroken and in so much pain. And my endo was severe per the dr. I can’t remember the “level”, but the Dr put me on the Lupron shot to help. I was given my monthly shot for either 6 or 8 months, can’t remember for sure. But I do remember after about the 2 shot, life was almost normal again. I was able to lift things with out crying, my husband and I were able to be intimate again, I slept like a normal person, etc. After treatment ended, I admit I wasn’t sure if the pain would return, however 17 years later and life is still pretty normal. I was able to have children again, only once in a while do I show any symptoms of endo, I have learned to live with the minimal pain that comes from a flare up as it is nothing compared to what it was.
Lots of luck and big hugs!
I had it and had the surgery… was a great help
I was eaten up with it. I had to have hysterectomy.
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The pain is bad. I totally understand.
I had it for YEARS before anyone figures out what it was. I was miserable. I ended uo getting a hysterectomy and felt amazing since, no more pain.
Horrible period camping. Heavy bleeding. Back pain. Went through i.v.f to have kids. Scar tissue, some blood clots.
It’s gotten better since having a child. Great now that I’m prego again.
I’ve had it since age 10, when my flo started. Mother had it also.
I had it also very painful also had a hysterectomy myself.
I too had endometriosis but it was scar endometriosis…I used to have very heavy to super heavy bleeding during monthly periods, 10 days before periods and 10 days after periods…experienced needle piercing pain, could not bend, drive, cannot roll to sides, the pain was kept on increasing in coming months, that is I used to experience pain throughout the month, my doctor said if pain is manageable no need of surgery, but if pain is unbearable then surgery is only option… I went for surgery had it in the year 2016, it was very big tumor
Had it since I was 13, had surgery at 16 and then multiple treatments since then. A mirena might help reduce the pain, I had one for 10 years, was nearly pain free at that time, but did contribute to a high level of anxiety. Symptoms included, Heavy periods, lots of pain, depression, lots of blood, but every one’s symptoms vary. Good luck.
Yep, had it. Had to have a hysterectomy also. Painful. I didn’t know there was different stages. Also had laparoscopic. Healing after was not too bad.
Get a D&C. Then see how fast or if it returns.
I had it 1996 it was very painful. Iy was as big as a grapefruit, had a hysterectomy.
Mine got so bad that i had a tumor as big as my uterus and had to have a full hysterectomy.
Diagnosed in early 20’s I’m 48 now, symptoms were extremely painful and heavy periods, excessive fluid retention, mid cycle was just as bad, intermittent bleeding, painful and bleeding during doing the deed. Mine was classed as moderate, I’ve had 3 laparoscopic surgeries, had it all removed, but there is scar tissue after each surgery, ovary required freeing as it was stuck down, lots of adhesions.
Once I fell pregnant and had my son it hasn’t returned, my only issue now is a reoccurring polyp on my cervix, and I’m in the latter stages of peri menopause.
Technology and treatment has come on in the last 20 years.
It’s so much more common and spoken about .
All the very best.
I had a partial hysterectomy 4 weeks ago. Initially was for fibroids, but once dr got in there found endometriosis also. Removed cervix, uterus and tubes and the endometriosis. Never felt better!
I had very heavy bleeding and severe pain and cramping for years, and miscarriages. I also had fibroids. I had a total hysterectomy at 37 and haven’t regretted that decision one bit
Heavy, painful periods, severe abdominal cramps even in between periods and no doctor was even interested in finding out if I actually did have it because I already had 2 children. It wasn’t until years later when I had a hysterectomy for something else that it was discovered I’d had it all that time
I have it. It’s pure he** I’ve had 3 kids and have had to be scraped twice to remove excess tissue that has grown in between pregnancies. Periods are debilitating some months. If under stress u have constant twinges of pain all month long. I tried the depo lupron to help treat it and well it made me feel 10x worse then to just deal with the pain.
I have had 17 surgeries for my endometriosis. I have had 2 children. At 31 I had my hysterectomy to stop the bleeding
My pain is always the worst. There’s days i cant get out of bed walk and eat. Ive had two surgeries so far. I bleed ALL the time. Some days light, some heavy. Im currently waiting on my hysterectomy. Im 27 and have two littles
The pain during my period is absolutely horrible and most physicians do not help with pain control. Periods are usually extremely heavy. Have a cyst type thing on my c-section scar because of the endo. Endo lesions on my bowel and bladder. Have had 2 surgeries and am gonna do my hysterectomy later this summer. I have 1 daughter and have 2 miscarriages. My last miscarriage was in 2017 and haven’t got pregnant since then and we do not use birth control of any sort. And as mentioned above, Lupron is absolutely horrible, I would not recommend it to.anybody
Alyssa Rivenbark Johns
I have been diagnosed with Endo for 8 years now. I’ve had surgery 3x for it. I need surgery about every 2 years to make things better. I’ve tried all kinds of hormones. They don’t give me a hysterectomy because I am only 35 and only have 1 child and I’m not married. I cannot have anymore children. I have had 1 ovary and both fallopian tubes removed. Its is on my liver my bladder and intestines. It is the worst and no one seems to help. I tried lupron about 2 years ago and it made me gain 80lbs In 4 months. Horrible. The pain is unbearable ALL the time for me. My periods are pretty normal flow wise but the pain is crazy. I have begged for a hysterectomy. Coming up on 2 years since surgery in July and looking at another one within the next 6 months…
Im 26 and have been diagnosed with endo since I was 13. I’ve had 3 surgeries for endo. I’ve tried every birth control under the sun and none helped. I tried lupron for 4 months and just bled the whole time and gained a tremendous amount of weight. I even tried vaginal physical therapy. Nothing helped… Just had a hysterectomy 6 weeks ago. They left my good ovary so I don’t have to do hormone therapy. There’s still a chance I can get a build up of endo on that one and need it removed as well. But for now, all is good. Minus the minor complication I have after my hysterectomy.
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I found out when I was 15 that I had Endometriosis & the pain was extremely bad. They put me on birth control, I gained 60 pounds & the birth control didn’t even help! I was miserable from the pain & constant periods, I would bleed for months at a time! When I was 16 they wanted my mom’s permission to do a hysterectomy because they said I would never be able to carry a child due to the complications from the Endometriosis but I flat refused because all I ever wanted was children! I had a total of 16 procedures due to the Endometriosis! When I was 21 I gave birth to my beautiful daughter but eventually at 27 I had a full hysterectomy because after my daughter was born my complications got even worse! I went 28 hours in labor with no pain medicine before having to have a c-section & I would much rather have labor pains than have the pain of Endometriosis! I’ve passed out in the middle of a Walmart before due to the pain & cyst bursting before! I wouldn’t wish Endometriosis on my worst nightmare!
I have it it’s horrendous 
the pain is unbearable . I’m having my second op for it soon. The pain gets alot worse just before my period and also gose into my back while on and just before.
The pain with my endometriosis was horrible I hurt so back I used a heating pad on my stomach and I literally could not walk. I had to have a total hysterectomy at 23. Because I had already had 50 plus surgeries. Hell I don’t even have a regular belly button any more. Dr said all of my internal organs where connected with the webs from the endometriosis. It was so bad it hurt to breath. She had to take out my appendix due to much webs on it. She told me I was the most severe case she had ever seen and she had already been doing this for 20 plus years. Severe very.
How have so many of you had multiple surgeries? For those of you who have had a hysterectomy… is it worth it to just get that done?
I was diagnosed with it after surgery at about 19 years old. Although, I always had HORRIBLE pain. I am 30 now and have undergone TWO surgeries to remove the Endo. My last surgery was almost two years ago and my pain is starting again. Not horrible but I know it will get there.
My symptoms have always been super bad jabbing pains, constant large cyst that usually burst in their own but it’s a mess and painful, long/heavy/painful periods with really bad cramps. Sometimes it gets so bad I have to call into work because I cannot mentally function or someday even move without being in horrible pain. It took me years of going to different doctors to even find one who would listen to me. So many said it was just heavy menstruation, which it is but it’s caused my the Endo.
I have had 3 miscarriages, tried different methods of BC (none, Paraguard IUD, standard IUD with hormones, depo shot, various kinds of pills, etc) so far the best for me is the Paraguard IUD. It’s hormone free but Drs always tell me with Endo it’s best to be on hormone BC but I cannot due to other effects it has on me. I have one baby boy and that’s probably all I will ever have. Luckily, I found a great Dr who actually listens and has compassion for me and he was able to prescribe pain meds for my periods but I don’t like taking them cause I feel like I’d be taking them more than not. I was told the only true solution is a hysterectomy but that is scary to me and comes with it’s own issues as well in the long run
It’s a horrible condition to have and I hope that you can get some relief quickly. Thinking of you sweetie