Endometriosis

[WithoutHope]

I am only 24. I was recently soon to be engaged. We were supposed to get a house together, get married and have a child together. When we broke up I was depressed because I thought I was running out of time to play the dating game and still have time to get pregnant. My mom reached menopause at an early age, and so that scared me. I've been suffering with painful periods for YEARS now. My mom said it was all in my head whenever I said, "they get worse every time." So, when I finally got health insurance and started seeing a doctor for pain I was having in my left side it came as a shock to find out I have an ovarian cyst on my left ovary. I was ok with it when she said she'd put me on birth control for treatment. I thought to myself, "I'll be fine."

I had a follow up ultra sound that broke my heart and shed any last shred of hope I had to have children. Having children is something MOST women want, but for whatever reason this last year i've wanted them more than ever and everyone told me, "You have your whole life, what's the hurry?" Now, there is not only a cyst on my left side, but another cyst on my right. The problem? It's not a simple cyst. I'm going in for an MRI on Tuesday. The doctor said it'll help to determine whether or not I have endometriosis. I'm scared. I've avoided doctors for SIX YEARS! I've never had a broken bone in my body or any severe illness. I've never had to have surgery ( not including the VERY recent removal of my wisdom teeth. )

I'm scared of needing surgery, of needing a lap, of not being able to have kids, of everything endometriosis involves. I have to admit that I haven't been sleeping much and i've cried almost every night since recieving my results from the doctor.

What is it like living with endometriosis? what does it all involve? will I have kids? My doctor hasn't been very informative and i've tried doing my own research online and it only makes me more upset. So I suppose i'm looking for a positive perspective from those that are living with this condition. Please give me hope.

[Tobi711]

don't freak out too much about it.  if you do find out you have endo, I will advice you to get a laparoscopy and change your diet. Also treat it aggressively because it can grow fast.  I had been living with pain ( all month long) for a while, had 2 m/c, and i found relief after I did a lap in May, and is now 9 weeks pregnant.  I am 25.  Previously, I had a laparotomy last March to remove 6 fibroids and do a uterine suspension ( ouch), I went on BCP after that, and developed endometriosis.  by the time I did the laparoscopy and DNC, they found a large bloody cysts, uterine polyps, endo on my ovaries and adhesions.  After the surgery, I did have some relief, but some of the symptoms were still there. SO I went on a strict estrogen free diet ( no dairy, no gluten, no red meat, no sugar, lots of fruits and veggies, blah blah), and I soon got relief by my next period.  By the end of June I was pregnant and the baby is healthy.  the diet was a little hard, but being in pain in much harder and I am glad I did it  

[kassidy21]

i was told that it was ovarian cyst when i went to er i was told this for 8 months come to find out it was endometriosis my doctor suggested surgery and i went threw with it and today i am fine. i say go ahead with it the surgery is only 45 mins. and afterwords you will fell better. but if you dont wont to have surgery ask about the shot lupron. it is a shot to help with the endomertiosis. its all up to you but i wish you the best of luck and just know everything will be ok.

[Neta100]

Hi there.  I know it can be scary, but think that think that things will turn out for the best.  I was scared also, but I tried to think positive and that I would be OK.  Now, 7 months after the surgery I am feeling pretty well and I am glad that I got operated.

You'll make it through and in no time, you'll be back to your normal life.

Best wishes,

Neta

[WithoutHope]

Well, an update. I had an MRI done. I'm going in for surgery at the end of August. They are taking my left ovary. I'm heart broken, nervous.. Ok I'm a wreck. I don't like needles. They make me so anxious I have to take drugs to calm down. So, the pre-op blood work is going to be difficult and going into a hospital and being stuck with an IV is going to suck a lot.  

None of my friends quite understand. Of course, I can't expect any of them to. They aren't the ones going through it so it's easy for them to say "it'll be fine." Oh ok, then why don't they do it? I bet if they were in my shoes they wouldn't be quite so calm. i've lost a lot of sleep. I'm sick to my stomach all the time because of the pain and the stress.

My last MRI has shown that I have a 7 cm cyst on my left ovary, an 8 cm cyst behind my uterus and a 2 cm cyst on my right ovary.

....Did I mention that i'm a wreck and that I don't want to do this and I'm scared to death?

[Neta100]

Hi there.  Sorry to hear that you are in so much pain, but I think there is hope and you are still young.  I was in the same boat as you are since several years ago doing an abdominal MRI they found a cyst of unknown etiology.  I wasn't given any birth control pills and the doctor said it was just watch and see.  Also, I had no pain or irregular periods.  Then on December 2007 they did an abdominal ultrasound since I have had ITUs for many years and they saw that the cyst had grown and that there was a thin wall.  They ran the CA-125 marker and it came quite high so my doctor told me I needed surgery and that he would probably had to remove everything.  I was shocked since I have no kids and it would throw me into an early menopause.  

So my research started.  I began taking to doctors and searching on line, until I found a doctor who was also worried about my fertility.  I was operated on December 2008 and what the doctor discovered was a 6 cm endometrioma and he was able to preserve my ovary.  I was given the 3 month Lupron shot and 6 months after surgery I feel quite well.  There are no signs of endometrioma and the CA-125 marker came back normal.  The doctor says I am doing great and that I can start trying to have kids.

My advice is to find a doctor who is not only a surgeon, but a specialist who is willing to preserve your fertility.  Hope this info helps.

Best wishes,

Neta

[WithoutHope]

I am so sorry for what has happened to you, but I can't thank you enough for the advice. I'll be sure to do just as you said and find a specialist. You gave me advice just in time because my doctor wants me to go to an obgyn, and I would have.

[fedup100]

I recommend you see a reproductive endocrinologist. I made the mistake of letting an ob/gyn who did not specialize in endometriosis remove my ovarian cyst. During the surgery my cyst burst. This surgeon did not even tell me this happened. I found out when I obtained my medical records to see a reproductive endocrinologist. When I had a lapraoscopy to about a year later, my pelvis was full of adhesions. My reproductive endocrinologist did a great job of excising the endo.

My advice is to contact the endometriosis association to help you find a specialist near you. Reproductive endocrinogist also treat infertility. I hope this helps.

[PrincessJam]

Waiting is the hardest part, and you won't know until that time comes.  You will be able to make it through!

[WithoutHope]

I have to say, thank you so much. Even though I haven't gone through the MRI, even though I still have to wait until Tuesday and waiting is the hardest part, I really do feel a sense of relief in knowing that there are people out there who have dealt with this, who have positive advice and have offered me hope and support. Thank you so much.

[blueeyes_jd]

PrincessJam said it perfectly!! there still is hope that you will have a baby!!! its not the end of the world... but it DOES SUCK!!! I think the not knowing is THE HARDEST part of this whole process... so good luck and if you need anything feel free to ask anyone on here ;) good luck sweetie!!

[PrincessJam]

Oh, and don't give up hope!! --we are all here to support each other through these tough times!!!

[PrincessJam]

Hi There,

I'm so sorry to hear what you are going through.  I can totally feel your pain as certain members of my family never believed me that I had so much pain.  They would say, oh just take some medicine and the cramps should get better.  Or, does it really hurt that bad??

I had a laporoscopy in August of last year.  I decided this was my best option, as I recently got married and we planned on starting a family.  This was my only choice to find out if this is what was wrong with me.  Sure enough, I have endometriosis.  Endo. is categorized into 4 stages, with 1 being the least and 4 being the most damaging.  Most people with stage 4 endo. cannot have children without the help of reproductive services.  (at least from what I've heard but there can be cases out there of course!!) I have stage 2, so it's in the middle.  

I went on Lupron after that for 6 months to try and get rid of everything else that they were not able to "burn out" after the surgery.
I am still waiting to get my period back after finishing in February. After that, then we are going to try and get pregnant.

My advice to you is hopefully you can figure out what is wrong with you.  I hope that you don't have anything so severe and you are able to get pregnant.
Living with endometriosis is a life long condition, until you get a hysterectomy, which doesn't sound like an option now until you are done having children.  There are many things that can be done to help with the pain, including surgery, and constant birth control pills.  Endometriosis grows by the feeding of estrogen (hence getting periods).  If you aren't trying to have a baby, you can try and be on birth control constantly, no periods, so you don't have the influx of those hormones and that might help with the pain.  

I was in the same boat as you... I haven't even had a cavity so I had no idea how the surgery goes and that I would be so scared.  Everything went GREAT! Recovery took about a week and I was back to normal.  It has provided me with a few months of relief, and at least my experience with the Lupron was wonderful, and I would do it all over again.  You need to research too for yourself and see what your options are.  This site is VERY helpful and women are more than happy to share their experiences with you.  Best of luck and let me know if you want to chat again.

Jamie :)