How old where you when you got diagnosed with Endo?

[vienna_h]

Out of curiosity, how old were you when you were diagnosed with endometriosis? Why did you suspect endometriosis/get diagnosed, after having pain, discovering a cyst or after not being able to get pregnant? What stage (I, II, III or IV) did you have at time of diagnosis?

Also, have you had children, before or after your diagnosis? Did you use fertility treatments?

[lolabelle0209]

I was officially diagnosed at 28. I had left side pain every month from about 16 or so. My first gyno told me to go see a gastro doc :/. I didn't go because I didn't think it was gastro related, it ONLY happened during my period. 12 years later I found out it definitely was not gastro related, that my left ovary was pinned to abdomen and being pulled down basically! Birth control helped me for a long time. I'm not sure what stage I am, but it wasn't spread that much, mostly my left ovary and the band (?) on my uterus, (not entirely sure what it is technically called) and a very slight amount on my right ovary. I tried low dose continual birth control for a few months and forewent further "alternative" treatments for the surgery and a definite diagnosis because my sister has severe endo.

[solfuego]

I have stage 4 endo it is spread everywhere and at my last lap 2 mths ago they could not even remove everything:(

[solfuego]

I was 21 and now I am 37, I had the symptoms of endo since 14. I have lived with this pain way too long. I have come to my last straw with this horrible disease. I have tried everything, so now I am just on pain killers(percote) to make my life at least liveable.At times the docs do not even want to give me pain killers and that makes me very mad because for 22 years I have asked for nothing, but this endo is just getting worse and worse, more pain:(

[kiabigear84]

I am 27 and have just been diagnosed with stage 2 endometriosis, I have probably had this from the age of 14 but it was never identified even after numerous trips to the doctors and numerous stays in hospital were i was orignally diagnosed with ulcerative colitis!!! I have suffered terribly from a teenager which heavy periods, back pain, blackouts and recently it has become so bad that my 7 yeat relationship was effected and we broke up due to how painful sex had become, i just couldnt bare the pain and was terrified to even try, i couldnt even have a smear whilst i was awake i had to have this done under general anastetic/

[bonbon1981]

I am 30 yrs old, & was diagnosed with endometriosis when I was 24 years old.
I've had endometriosis since I was probably 14 years old.

I had a cyst on the left ovary which would not go away; I had my first laparoscopy done, found out I had endometriosis; I needed a laparotomy done due to the cyst was pretty bad. My left ovary was really messed up, in addition my left tube was messed up.

I'm pretty sure I have stage 4 endometriosis. I eventually had to have my left tube & left ovary removed. I've had 3 laparoscopies done for cysts on the ovary.

After I had my laparotomy done I was told that In-vitro fertilization would help me to become pregnant.
I did 3 IVF cycles. with my first cycle I did become pregnant, but sadly miscarried. with the fertility medication I got multiple endo cysts & 6 eggs.
my 2nd cycle we increased the medication I got multiple endo cysts & 1 egg which died.
3rd cycle- we didn't increase the medication I got 6 eggs we implanted 5, nothing stuck.
I guess my endometriosis was pretty severe so IVF didn't work out.
Honestly I wish I was told the truth by my R.E. I feel he just wanted $$$.

I would love to have children, but due to only having the one ovary & 1 tube, I'm not sure if it will happen. My tube keeps becoming blocked after HSG tests.

  

[FContreras]

I was diagnosed in October 2011 at the age of 31. I'm sure I've had this for awhile, but it wasn't until I was in the ER on August 5th of 2011 with a ruptured cyst with extreme pain and bloating in my pelvic region that I ever knew anything was wrong.  Originally they thought it was a functional cyst, something which my doctors had suspected a year prior as I was reporting pain radiating down my legs and sharp pains in my ovaries when I ovulated.  I also used to get extremely fatigued the week prior to my period and the first day of my period.  I always had heavy cycles, but nothing that ibuprofen, midol, or excedrin couldn't handle.  I never realized that it is not normal to have periods that were heavy for 7-8 consecutive days with a lot of clots. That's all I ever knew.  Then in college, being the "responsible woman" I went on Depo Provera. I continued that for 8 years until I switched to bcp. I was on that for 1 1/2 years before I realized that all my emotional instability and headaches were being caused by the bcp. So I got off of it.  Six months later I started to get symptoms, only I didn't know it wasn't normal.

On October 2, 2011 my husband and I went to the Kaiser IVF clinic in Santa Clara to discuss IVF with preimplantation genetic testing for Huntington's disease.  He is a carrier of the gene and we don't want to pass it on.  So at the appointment, I tell them about my recent experience and continued pain, fatigue, and spotting.  At that time the specialist asks if I have time for an impromtu transvaginal ultrasound.  I said ok and almost immediately she states, oh yeah you have lots of cysts on your left ovary and endometrioma on your right.  Boy was that a shock!

Since then I've been riding a wave of persistent pain, fatigue, anxiety over when my next flare up will be, and depression over everything I've had to give up.  I am transitioning my diet to gluten/wheat free, avoiding soy, red meat, dairy, caffeine, and alcohol. All of these either contribute to inflammation or increase the pain response. But it is really hard.  It's getting easier, especially when I eat bad and see almost immediately how my pain gets worse.

I'm aiming to have a laproscopy in March to remove the endometrioma and drain another cyst, plus see what else is lurking inside me.  I put IVF and children on the back burner for now.  With everything that I am going through right now, I'm not sure I could handle that too.  Best of luck with your treatment process.  Do lots of research and ask lots of questions.

[buba22]

i was 28 when diagnosed ,  ive had these pains since having my son back in 2005 i suffered all sorts of problems and had a series of operations so they put all my pain and suffering down to that , it wasent till i regualry visited the doctors about the pain i was in and the fact that ive been trying for a baby for 3yrs and still got no where , my doctor refered me to see a gynacologst who then booked me in to have a laparoscopy and thankfully found the problem , i have a check up in 3mnths but as to nt being able to concieve they couldnt help me .

[jess4412]

I was 18 when I was officially diagnosed.  I had terrible chronic pelvic pain, a ton of break through bleeding, painful sex, and really bad cramps with my period, and extremely frequent urination and urgency.  My pain was becoming constant so I got checked out.  I was diagnosed with stage I-II (mild).  It was atypical endo (common in adolescent cases) on my ureter, bladder, and cul de sac area.  

[vienna_h]

Im bumping this up cu im still curious in hearing your stories

[karieme]

Hi there!

I was 26 when I was diagnosed with Stage IV - I had easily had it since I started menstruating at 16, the pain really set in at 18 and by 21 I was passing out in pain. By 26 I had not been able to get pregnant and had an ex-lap that found basically everything in my lower pelvis fused together with chocolate cysts, adhesions & scarring. Fortunately I requested this procedure be video-taped (it's done laparoscopically, or by camera, so they can take pictures or record the procedure, all you have to do is ASK) so I could see the horrific mess in there and watch as they cut into my bowel (not being able to see it in the clutter). That endo came back in about 2 months. 3 years later I would need surgery again as I became incontinent & suffered horrific sciatica from the pressure and cysts. That surgery was done by the best physician/surgeon I could find, Dr. Tommaso Falcone at the Cleveland Clinic and he all but cured me, I've only had a few bad periods and some symptoms in the last couple of years, almost a full 9 since my that surgery.
Unfortunately, my husband and I were never able to conceive, despite almost 10 years of trying and every procedure under the sun. We did, however, suffer 3 miscarriages throughout the time. No reason given, but my disease level and scarring from surgeries are probably the culprits.

If you have any other questions, please feel free to ask.
Best,
Karie

[freya25]

Hi,
I was 17 when diagnosed I am now 29.
I knew from an early age (around 14) something wasn't right. Doctors constantly told me to get on with it as it was just regular period pain--I don't think being of school for 7 days a month because of severe pain & bleeding is normal but apparently they did as I was too young for endo(rubbish!!!!)
I used to collapse because of the pain & finally at 17 I went to a private doctor, had a laparoscopapy & was diagnosed with stage 4 endo-I was crushed-fearful I couldn't have children but happy that finally I had a diagnoses.
I was put on zolodex for 6 months & was given oramorf for the pain.
As the years went on the pain got worse for me & I was put on morphine patches-slightly better.
We decided to start to ttc when I was 25-ended up on clomid & fell pregnant after first cycle with triplets-they are now my baby angels as they were born at 22 weeks. Not fault of endo.

I fell pregnant in 2010 & gave birth to my eldest daughter Alba-Luella & gave birth to Aspen-Bluebell in August of this year. I'm now expecting again (a complete surprise but a wonderful one!)
I have to say pregnancy hasn't improved my endo at all but I'm proof it can happen-endo doesn't mean no children!!

All in all I've had 7 laps, 3 chocolate cysts & part of my bowel removed.
I just pray my daughters don't have to go through what mama went through but having them has made me realise what life is about & why we have to live it!!  

Excuse the chapter ;) x

[am511]

I was just diagnosed last month after suffering for like 10+ years of undiagnosed pain. That was treated for multiple kinds of abdominal pain. The only reason I finally had the lap to diagnose endo was becuse I had several bouts of Right Lower quad pain and they kept finding free fluid in my pelvis on CT scans which they kept saying was probably a burst ovarian cyst. All which had been treated by my PCP. Finally I had a severe case of pain that sent me to the ER and they said the same thing that I had a cyst and sent me home. All the while no cyst had ever been seen. After visting my gyno she put changed my bc from the ring to oral pills and told me to try them for a few months and if that didn't change the pain then she wanted to do the lap to see what was causing the pain. Needless to say the bc didn't help and I had the lap. She didn't give me a stage but I would say it would be a stage one because the disase was very minor but the pain is severe. But she told em that I probably have severe microvascular disease that cant be seen with surgery so we may need to do lupron if the bc doesn't help.  Oh and I am 26 now, and when I was diagnosed.  But I think I was like 16 when it developed because that is when the pain started.