[Endo Mom]

Good Afternoon Everyone,
I am new to this post and am in desperate need of venting to someone who understands, so please bear with me as I vent the past 3 years -
My daughter, who is now 22 years old had her first endo surgery 3 days after her 19th birthday. The doctor at that time had to do abdominal surgery in order to remove all the Endometrium, cysts (3 baseball size and several egg size) and scar tissue and quite possibly a tube and ovary. After the doctor finished surgery and came out of the OR to talk to me she told me it was the worse case of endo she's seen. When I asked about children she said it wasn't likely as there was extensive damage to her tubes but everything's still all there !!! (Hooray!! the tube and ovary was saved) (She also had told me the damage was so severe that if it had been me, she would have done a complete hysterectomy). 2 months after the healing process my daughter seemed to be doing well. ~~~~~Fast forward 10 months~~~~ She's having problems again, goes to another doctor (she'd moved to a different state), this doctor, a leading doctor in fertility and endo in the state now says she's got to have another surgery, this time though it can be done laproscopically (Hooray!!!) This time, 2 weeks after her 20th birthday, the doctor is going to remove 3 cysts (grapefruit size) and numerous others, remove scar tissue, endometrium and he's going to sever the nerves from uterus to brain. After the surgery the doctor tells me the damage was so severe he wasn't able to complete everything he'd set out to do, the cysts are gone, the endometrium is gone and some scar tissue. I asked about her ever having children, he said "There is always a chance if everything is still there". ~~~~Fast forward 2 years~~~~ My daughter has gone to yet another doctor who has her complete medical file and he suggests a complete hysterectomy, as the endo is working it's way throughout her entire body, from her legs to up her chest!!

In the interim of all these surgeries she's done several strengths of birth control several lupron injections, tried homeopathic remedies and when she heard it may be linked to red meat went vegetarian!!!

How could something like this happen to someone so young? At this point I am completely for this surgery as I am so tired of this young lady not feeling well, yes! I would like to have grandchildren from her, but it just isn't worth seeing her in as much pain as she's in!!! She's in constant pain!!! Viacadin is no longer working for her. She's got a prescription for OxyContin but doesn't want to use it as she's heard it's habit forming. She hurts to pee, have bowel movements, sex, hurts to lie on her stomach, hurts to walk for extended periods of time. She's always got either a bladder, urinary tract, kidney infection or bronchitis.

Well, I am done venting now, and if you have made it this far I congratulate you!!

[Endo Mom]

My mother has Endo, I have it although no where near as badly as she does. I was 17 when I had her, so maybe that stopped it from claiming my life as well!!!

I too suffered from endo. I had a complete hysterectomy at the age of 24, best thing I could of ever done. I had endo and polycystic ovarian syndrome. Had gone through several surgeries to relieve the symptoms and try damage control however none worked. So My husband and I went with the surgery and I have never felt better. We are in the process of adopting a little boy now so my mother will get a chance to be a grandma bust most of all get to be a mommy.

Jody

[Endo Mom]

CONGRATULATIONS!!!! I bet you are the most excited person in the world and I don't blame you in the least!!!
I'll keep you in my thoughts and thank you so much for your insight on my daughter!! I KNOW she will feel so much better and I am all for this surgery, but still... ya know??

!!!C*O*N*G*R*A*T*U*L*A*T*I*O*N*S!!!

Hi Endo Mom,

Sorry to hear about this difficult journey.

Unfortunately I was 17 when I was diagnosed with Endo and Poly Cystic Ovaries.

17 operations later I finally realized that I would not be able to conceive a child. Though my cysts were not the size of your daughters, the pain, discomfort, nausea, painful sex and low quality of life etc were probably the same.

I must say I held on to my parts in vein. I really hoped the doctors were wrong and by some miracle I would get pregnant.

I spent my 1-year wedding Anniversary in the hospital due to Internal bleeding from all the scar tissue and problems with my Uterus. There were complications; I ended up in surgery within 24 hours of the first surgery. The doctors ended up breaking a few of my ribs to save my life. I was opened from hip to hip twice and had broken ribs but at least I was alive.

I finally had a complete Hysterectomy and must say I feel tons better.

I definitely have a better quality of life.

I am now a mother to a beautiful baby girl who was placed in my arms by a wonderful birth mother.

This baby is so much like me that I believe that had I given birth this is what my daughter would have looked and acted like. My family not only loves our daughter they also love her birth mom.

Oh...I was also able to nurse our daughter even though I never got pregnant. Our birth mom found us when she was 3 weeks along so we went to all the doctor appointments including hearing our daughters heart beat for the first time and finding out the sex of the baby. Our birth mom was so wonderful I was able to rub her tummy and sing and talk to our daughter. It was the most incredible experience of my life.

Your daughter will need acceptance in order for her to have the Hysterectomy; it may take you sharing the loving option of adoption.

When Robert & I started talking about marriage he knew that we would probably never have biological children. It was a tough pill since he was the last male in his family.

Though it took him a little bit to get used to the idea of adoption he finally realized that it is more important to parent and have a family then it was to have a biological child. He loves our daughter more than anyone can imagine.

She is truly a daddy's girl.

Next year we hope to welcome a new addition.

Feel free to PM me, I will gladly talk to your daughter or do anything I can to help you through this journey.

Many blessings,
Maria

[Endo Mom]

You know, I am so tired of all of this at this point. I just can't imagine what Pat must be feeling.

Her doctor, Dr. Hart scheduled the surgery for the 14th, when he couldn't find an assistant for that day he chose the 12th, the whole time Pat and I are both rearranging our schedules...no big deal. On the 5th Pat gets a call from Dr. Hart's office... he's been deployed (He's national guard) to Indonesia...Of course this is already 1 week away from her sugery date, she's already quit her job (she's a waitress) they have already hired a replacement and now they are postponing her appointment til mid Feb. Well, Dr Hart's office found a replacement surgeon (the assisting) to do this for her as they know she's in pain and needs this surgery. Now, today, 2 days before she's scheduled to have a hysterectomy the replacement doctor says he's "uncomfortable" with a hysterectomy and refuses to do it. He says he's going in laproscopically to do everything the other doctors have done. And then to top it all off... Dr. hart told Pat that doing another surgery laproscopically could kill her! And he's wondering why she's freaking out on him!!?!?!

ARGH!!! Thanks for the vent!

Endo mom,

Your daughter has the right to end her suffering and pain, she can demand them do the hysterectomy. Alot of doctors have a problem with age with a woman.

We found a doctor that was willing to help us with all of the issues. Towards the end we were given three options.
1. uterian ablation (they burn the inside of the uterus and leaves you unable to have children )
2. Hysterectomy
3 Lupron Shots with the chance they may help.

our choice. #2

A lot of people were like your so young. I was like i am in killer pain.

My uterus was actually trying to discard itself. So my own body was ready for it.

Got to surgery and the nurse was like is this chart right. You know this girl is here for a hysterectomy. then she came to me and was like you do know what a hysterectomy is don't you. I was like yes. She was like you know what that means right. I was like yes.
She was so shocked but was like OKay. Sign here.

Hang in there. And Demand proper care and pain relief.

Jody

[hodyhouse]

Please make sure your daughter sees a reproductive endocrinologist - not just a gynocologist. Its will make a critical difference. Also, consider havening her eggs frozen. Just because she has endo does not mean she is not producing eggs.

[Endo Mom]

hodyhouse - Thank you, and she has! She's no longer producing eggs.

jojobear - I spoke to her doctor (the replacement for hers who has gone to Indonesia for a couple of weeks with the reserves) He's uncomfortable with preforming the surgery, not because it's a hysterectomy on a 22 year old. It's because she's too much of a mess and too complicated. He's going to keep an eye on her and treat her until her doctor returns or she finds someone to do it for her.

It SOOO pays for me to speak to the doctor. She is in so much pain and so emotional!!

Poor Baby!

Thank you all sooo much!!

[hodyhouse]

Best of luck with your daughter - she's in my prayers. You're an awesome mom - my mom let me lie on the bathroom floor and cry from endo pain since I was 17. She figured since I wasn't sexually active there was no need t go to a gyno. I'm moving toward adoption and think you'd make the best grandma no matter what!

[Endo Mom]

To be honest, I don't know what I'd have done had she been in that much pain at 17. I also have Endo, but I got pregnant (with her) at 16 and again at 18 so I've not suffered anywhere near as much as her. I still have severe cramping (18 periods a year too!!!), but it's nothing compared to her. But I probably would have cracked it all up to be "You're just like your mother" So please, don't blame your Mom. She may have just not understood.

[Stace33]

Are you my mother?! The story of your daughter's endometriosis sounds almost identical to mine. I have always had painful periods from day 1. When I was 20 years old, I went to my gyno for severe pain. An ultrasound was done and it showed a large cyst that my doctor was concerned might burst. I was scheduled for surgery 3 weeks later. My doctor told my parents that the surgery would take about 1 hour. When 2, then 3 hours passed, they knew something was wrong. My doctor came out and told my parents that it was the worst case of endometriosis she had ever seen. She had to removed all of my left ovary and tube and most of the right ovary.
I was put on Lupron for 6 months, which made me gain weight and go through menopause(a side effect of the drug). After that I went on the Pill to stop the progression and keep it "in check".
Fast forward to 2000. I had been married for 4 years and my husband and I decided to try an get pregnant. I went off the pill. A month later, I was crying in such severe pain on my way home from work. I went back to my Gyno and she suggested doing a laparoscopy. I had the procedure and was told the only way we could have a biological child was to try IVF. We tried twice with 2 different doctors, without success.
It has taken a long time for my husband and I to come to terms with this. Especially me, though. We finally started the adoption process in 2003 and recently decided to switch to international adoption. We have chosen Guatemala because of the age of the children(referrals when they are newborn and they come home around 6-8 months later--at least that is what our agency has told us. It can be longer or shorter than that.)
I still have not had a hysterectomy, for many reasons, but I know it is in my near future. I am truly afraid that it is going to be a very difficult operation.
Please let your daughter know that she is not the only one going through this. I know so many people with endometriosis. Good luck to you. I will keep you and your daugther in my prayers.
I know how hard it can be.

Sincerely,
Stacie

[jnstvny]

I am so sorry to hear about the hard time your daughter has been having. I was diagnosed with endo at the age of 21. At a routine doctor's appointment they found something on my ovary. After a sonogram they found that is was an endo cyst the size of grapefruit. I had surgery about a month after, and was also told I could lose my ovaries. But that didn't happen. They also told me that conceiving may be difficult. I was married at 23 and started to try to have children at 25...We went through insemination and two invitro's. I am now 31 and in the process of adopting a beautiful son from Guatemala. It took my husband and I awhile to come to terms with not being to have children of our own. But in a few months we will be bringing our son home, and that is the best feeling in the world. Good luck to you and your daughter.

[Endo Mom]

Good Morning!

I just returned from being with my daughter as she underwent a hysterectomy! And she is doing remarkably well! She had the surgery Wednesday Afternoon and we brought her home from the hospital on Friday Afternoon! The doctor did leave in 1/2 of an ovary in hopes that the Endo won't continue to grow, but she'll get the hormones she needs, he's not sure it'll work, but my daughter was willing to give it a try. She is doing so well It amazes me. She was on the floor playing with the ferrets Saturday morning (of course, "I" was ) but she was having a great time. She's up and moving around without any problems. Ahh Yes! The luxury of youth!

Well anyway, I want to thank you all for allowing me to vent and cry on your shoulders I have appreciated it over the last month and a half.

[2nd time round]

I suffered from severe period pain all through my teens and twenties. I got pregnat right away at age 22 with my first husband. I never had an ultrasound with that pregnancy. I got divorced years later and remarried years after that. My new husband and I tried for over 3 years to get pregnant. When they did The dye test to see if my tubes were blocked ( an infertility step) they had to do it twice because the dye would not flow. I got pregnant right after that test. When they did the ultrasound, they found two baseball size cysts. I was 3 months pregant at the time, so they didn't want to test them for cancer, but said the chances were slim, but they could be cancerous. I went through my whole pregnancy thinking I had ovarian cancer. I was scared to death. They told me if they weren't cancerous, they would probably go away. Months later when they were not shrinking in size, my DR. recommended surgery to remove them. He asked me if while he was in there if I wanted my tubes tied. I was not thinking clearly, and said yes, I thought I was going to die from cancer( I was hormonal and not thinking correctly ) so the thought of another baby wasn't even possible. After the surgery he said it was the worst case of enometiosis he had ever seen. He couldn't believe I was able to concieve. At that moment I became sad, being relieved it wasn't cancer I wanted another baby. Now that was not possible. Years later, my baby is now 8 we are adopting a little girl. Maybe it was all meant to work out that way. Things will work out for you and your daughter too. Give her a big hug for me.