Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

1,254 Members

9,441 Posts

0 Online

taters90 09/18/2011

Hi ladies,

I know I have been absent for some time here,
Life has been hectic and as most of you know a hectic lifestyle and endo do not mix!

I recently saw a new doctor...he attends the support group which has newly started in my state. I have done research asked questions etc and he is one of the best which made me happy. But what really caught me was the fact he sat there and talked to me (free of charge) about MY condition, granted it wasnt for more then 10-15 minutes but they were a precious few minutes. He cared enough to explain things to me...and in my books thats alot...usually I have a hefty fee to pay at the end of such a talk.

I went to my appointment knowing he couldnt do much more for me.
He looked at all my pictures...his biggest concern, I have such bad aggressive disease at a young age...that, and I have exhausted all my options medically, surgically and naturally and I am now dependent on painkillers...he said this situation is usually something he see's in older women.

I was frustrated and remeber blurting out something like this;
"Im ready to search for a hysterectomy, im newly 21, I've been dealing with this for 12 years...I can't walk or stand longer then 20 minutes without needing to sit...heaven forbit I am out longer then an hour, I am going to pay for that! I get to the point where I need to be helped into bed I can't walk for agony quite literally can't move my legs....I pee it pulls, I poop it is agonizing and pulls, this isn't fair!!!!"
Getting teary...I am 100% sure you've all felt this way.

he didn't deny im in a pickle...but I think I was trying to get blood out of a stone...I knew I'd done everything...and yes i need more surgery but it wont help.

But he responded with something like:
"You've delt with this longer then most cases I've seen, and I havn't seen many this aggressive, you are one of a few in my file, You can't go on zoladex (our version of Lupron) because you're bone density is already too low, we can't put you on anything else you havn't done...and right now taking the pill and having the mirena is all you CAN do...I can give you a hysterectomy, but we don't know what causes Endometriosis and even if I excisie(sp?) it all, I can't garuantee you a pain free life, what I can garuantee you then though is no chance at fertility and I am not taking that away from you (he is a fertility specialist too), I have to make life comfterble for you now...that is what I must do".

I was ready to burst out crying...he is right...I know it. I just want some magic...I want someone to give me a cure on a silver platter. I am naive enough to believe that.

This is my plan of attack,
I am to go back to him in 3 months.
I am to have an ultrasound at a specliast place on October 4th...To see what is going on with these cysts (he said my last doctor should have re-checked on a 5cm cyst).
I am to go to a pain specalist where he will put me through a ketamine infusion for 5 days in hospital this is to re-set the nerves in my pelvis.

He said;
For Adeno - Mirena
For IBS - Diet
For Nerve damage - Ketamine infusion
For Endo - nothing more can be done.
For Cysts - The pill + ultrasounds.

This is my plan of attack for the next 3 months.

I thought I'd update you...

I hope you are all going well and I look forward to hearing from you!

*hugs*
x

deleted_user 09/18/2011

Thank you for the update, I am so sorry that things still look so hopeless right now, but this doctor sounds awesome and like he truly cares so I really hope that's true, and that he can help you!

Good luck! (*hugs*)

--Tye

autoimmunesx 09/22/2011

Thank you for the update, I too am not on here often, but have wondered how you have been and pray for you. My heart breaks for you, to have been through so much, to continually be in so much pain, and to not have more that can be done for the endo. I can relate alot, lately my pain, ect is from other autoimmune diseases, ect, but similar on pain, being basically bedridden to often, ect.

I don't think you are naive at all, wanting magic, a cure on a silver platter, I am the same way, I think its called hope. It is what gets us through the day, and hey miracles can happen :)

I pray that the treatments you are getting for the other things will decrease some of your pain and make life at least a little easier.
Would love to hear how the ketamine works, please keep us updated on how you are doing

Hugs and Prayers

taters90 09/22/2011

Will most deffinately keep you updated! =))
Thanks for the reply!
How have you both been?

I am trying to sneak back on...it's hard with work and study and well being so sick.

Hope...it's a beautiful thing, and I pray I never lose the ability to dream and hope for a brighter day

whyme123 09/22/2011

Hi taters. Sorry to hear you are still struggling. Thanks for the update. And remember no matter how long you are away we are still here! :)

honor435 09/22/2011

sorry for you. A hyst may or may not help, are you ready to accept no children? I had a hyst and was pain free for one glorius year! Then it came back on my bowel, bladder and ureter, I had to have an open laporotomy for the endo on ureter, I now have chronic pain, everyday and am in pain mgt. what are you taking for pain now? Does it help? Sounds like you have some thinking to do, im not telling you to have a hyst or not, but if you decide to remove your ovaries you have a whole other set of problems, i thought i was going to lose my mind( anxiety and depression), I had to try every kind of hormone out there( finally went with " bioidentical". Also, taking or leaving the cervix, it kind holds things in place so you dont get a prolapsed bladder or bowel and some say it makes your orgasms better( whats that huh?) anyways please feel free to pm anytime. prayers for you. K

SSWarning 09/22/2011

I am so sorry you received this news!! What does he say about you ever getting pregnant? Would you have to have surgery first? This worked for a good friend of mine that has stage IV. With in a month after surgery, she got pregnant, so don't give up hope for that. Her endo is so bad that you could practically "scoop it out" with you fingers! AND she had adhesions! I believe it was her ovary attached to her bladder.
Don't give up on treating your endo! Perhaps down the line your new doctor will be willing to perform surgery.
You are one of the strongest women I know and I have learned alot chatting with you in the past.

Stay Gold!
Stephanie

deleted_user 09/22/2011

Gosh! I heard that ketamine is used for Complex Regional Pain Syndrome or RSD, but never for pelvic pain. Gosh!

Sorry, but I don't ever give up! My options were limited to repeat Lupron and then myomectomy or a hysterectomy for large fibroids. And this is by a Reproductive Endocrinologist (fertility specialist). I came out being distraut, depressed, and distrustful. It turns out I wasn't treated for my endometriosis the whole time.

He is right. They can't guarantee fertility and they can't gaurantee that you will be pain free. You have to go by their experience and skills.

But, don't take what this specialist say literally! If you are determined enough, pursue other endometriosis specialists that can handle extensive endo in those three months. They may not promise you they won't do a hysterectomy. But, at least you get a second perspective. I would hate for you to go through despair when you should be optimistic. And, don't beat yourself about being naive honey! It's not your fault!

Find a specialist that can handle endo with bowel and bladder involvement (bc most gyns are scared to touch it), do a sacral neuroectomy, and can perserve your fertility.

My plan of action was to see a endo specialist who won't put me on Lupron and can handle my case. It's been exactly two weeks from my surgery and the pain is less. It's expensive, but I've realized it is well worth it. It will probably come out to be the same anyway.

taters90 09/22/2011

Honor...No Im not ready to give up kids just yet...although sometimes I do wonder...but not just yet. Thanks for your advice though! =)

I would probably have surgery first sswarning =) Anything to help right??

I'm not giving up treating my endo...the issue is there is nothing left to treat it with - quite literally..they've done everything they medically can..and while I may need surger every 6 months due to its aggressive nature, that causes it's own problems and it's not something I can financially afford either =(

Trust me I am determined...this man is about my 8th..and I do rather like him, only because he is gentle honest caring and wants to address the whole picture. My last doctors only wanted to address the endo and only with surgery and put me on pain meds. This doctor is actually trying to address everything that contributes to my pain, fertility and way of life, that is something I havn't seen in a doctor. He's not giving up, and he hasn't ruled out surgery, he just doesn't think my body should go through this every 3-6 months even if it is aggresive as I said before as it has it's own set of issues. I actually thought him not butchering me straight off the bat was amazing...usually they can't wait to get me in there.Once I come back in pain...they want nothing more to do with me!

He handles severe endo alongside infertility, he deals with the bowel and bladder, absolutely everything to do with endo, adeno, cysts and then he goes on your journey with you for fertility. So far he's been worth my money thats for sure!

Thanks for your kind words ladies and thoughts
x

deleted_user 09/23/2011

thanks for the update!! it seems like me and you are pretty much twins in this since we share so many of the same issues and are 1 year apart. if you ever need to talk im here and you have my fb.. i will message you my number also if you ever need some cheering up :)

feel better girl!

deleted_user 10/04/2011

Have you tried Aygestin (progesterone only pill)? It worked wonders for my daughter. It's 5, 10 or 15 mg. of norethindrone (taken orally, every day). It provides a higher dose of progesterone than Mirena. My daughter was originally started on Camila (.35 mg norethindrone) after her laparoscopy, but it did not work to stop her pain or bleeding. After two months of that, her gyn eventually suggested Aygestin (5 mg dose of same medicine, norethindrone, was 15x higher than Camilla). Of course we were concerned about upping her dose so suddenly, but we spoke to several pharmacists (plus I did my own research) and found out that progesterone-only pills, while they may cause some side effects (e.g., mood swings), are not harmful. Since starting the Aygestin, my daughter has been pain-free! Please consider trying Aygestin if you haven't already. You start at 5 mg./day, and increase the dose every two weeks (7.5 mg., 10 mg.) until the pain and bleeding subside.
Hope that helps! Good luck and I hope you feel better.

taters90 10/04/2011

I have done progesterone only pills to no avail. did not help.

To further update...in the last 6 months I've developed Polycystic ovaries. 1 ovary had 20 cysts the other 20+ one ovary took her along time to find and she found it "in a place I would never have usually looked, how odd!" I'm having a range of blood tests done for my hot flushes.

I'm overwhelmed... =(

Join the Conversation