Considering Hyster,stage IV endo

I am a 31yr old single mother and told myself that if I didnt find anyone and have anymore children I was going to have one when i was 35. I feel i could get one though right now so that atleast i could have some quality of life for the child i already have. I have suffered for over 15yrs. 15yrs of no one listening to me that there was a problem and since my surgery still feel the same and i know its back. I dont think that it will ever go away. I have a great surgeon that removed everything without removing any parts so I am confident that if I had the surgery he would remove every single piece so that my chances of it not coming back would be good. I know that it still could of course but I really belive i would find relief somehow. I am on the BC since being on my second round of Lupron and its not working at all. Besides me not getting a period the pain is still there, and even more so now with my intestines and stomach. Before my surgery I was nauseated for a year straight, with pressure on my stomach and left lung. I took pantaloc for the acid indigestion for six months, after my surgery it went away and now a year after i feel the same kind of pain and pressure. I need help i really do. I have researched this disease over and over and over again and i know that there is no cure and this is my only option to try. I can supress it till I am blue in the face but it is still there. The doctor told me to go on the IUS mirena because i had such deep adheasions and it said that is the best for it, but i dont want to go on it because its only going to do what the BC is doing. I am sick and I am tired of all of this. I also have FMS and CFS on top of all of this and I am exhausted with fighting a battle that I know I will never win.

Any advice would be great.

angela

Hi Angela,

I suffered from stage IV endo and did all the treatments that did not work. Hysterectomy was the only relief I got from my symptoms. I have two children and did not want anymore.

Whatever decision you make, I wish you all the best!

so the meds that you are on now, do they help? What are the worsts side effects that you have faced?

Hi. The Mirena and the bc pill are not the same. The Mirena precvents the lining of the uterus rebuliding every month, the pill stops ovulation. Good luck with it all.

Hi Angela,

You sound exhausted. Sending a hug your way.

First, keep fighting. Never give in. It's a long, hard road, and you'll need energy to keep moving forward to finding relief. The good news is that you've got support to walk the road with you!

Second, it sounds like you're ready for a heart-to-heart with your surgeon. There is no cure for endo, but there are lots of ways to ease the pain. If what you're doing isn't working, keep exploring. A hyst may be the right decision at this point. Or, your dr. may have something else up his sleeve for you to try.

It's such a frustrating illness. All of the trial and error to find relief is exhausting for anyone- and it's even harder with your other illnesses.

Whatever you decide to do next, remember: You're not alone. Let us know how you are doing. Wishing you all the best.

Thanks so much for your help..I have an appointment in october and the only thing i havent tried and have a presciption for is the mirena. I have heard so many bad things about it and i know in the end it really doesnt matter at all because it will never leave.. I just feel helpless with this. I am not sure if my surgeon likes to just give a hysterectomy although the last time i was in there his assistant asked me if I have thought of having one. I dont know if that was her asking or him. Last time I went he put me back on the lupron and gave me a prescription for the mirena. I just know my body and it isnt going to work. Its like my body rejects everything. Right now I am on the pill. If i come off it i am nauseated.. If I am on it I feel bloated and sick. There is no winning in this, Its sooooo frustrating.

October seems a long way away when you're as miserable as you sound.
If it's any help, I had 6 surgeries and lupron 3 times prior to deciding to go forward with the hyst. (plus every type of bc & depo provera- all of which failed).
After the hyst, I have had 3 surgeries to remove more endo that grew, another round of lupron, and am looking at another surgery to get more endo out again. It's a sucky road. The great thing about the hyst is that I dont have the horrible periods anymore. I'm still in pain every day, but the debilitating periods are gone. And, that made the hyst worth all of the emotional pain. (I was 29 and never able to get pregnant).
I, too have been fighting this for about 15 years. Making the decision to have the hyst was hard- but it was the only option left. I was devestated when the endo grew back time and time again. You're right- sometimes there is no stopping it.
I have a friend who had 13 surgeries & suffered for almost 30 years with endo- even after a hyst & no hormones. Suddenly, it all stopped for her out of the blue. She is pain-free, active, and as happy as can be!
That's what I remember when I think this will never end and how sad and painful my life can be. There is a light at the end of the tunnel, and I'll get there. You will, too. Hang in there.

I know this whole process just wears away at your soul. I have stage four endo and am also in the final throws of deciding on a hysto. You are still young, I think that makes the decision much harder, but at the same time going through this on an on-going basis is no picnic either. It's the better of the two evils decision, I know I am facing it too.

I would like to say though that your description of the pressure on your lung would scare me. Endo in rare cases can grow on the lung and cause a lung collapse. You should talk to your doc about getting that evaluated. I wish luck in coming to the decision that is right of you.

Lisa

Although you feel confident about your surgeon, I would suggest consulting with an endometriosis specialist before making your final decision. Not only are endometriosis specialists very skilled when it comes to surgery, they also understand how endometriosis affects our whole bodies and thus approach it a bit differently.

Removing the uterus doesn't cure endometriosis so you do want to be sure the surgery is the right treatment option for you. You also need to consider what you will do regarding your ovaries and hormones. And estrogen can feed any endo but the estrogen is needed for our overall health! It does get frustrating!

I would suggest making a list of all of the pros and cons for you and each option your doctor has suggested. Do your research and then talk to your doctor about every options and what you think about them. Seek a second opinion even if you let your surgeon to the surgery. A second opinion can confirm you are making the right choice, possibly offer some additional options, or bring up issues you have not even considered.

I know it can be hard to know exactly what is best and there is no absolute answer. We each have to do what is best for us based on our health, our situation, what we can deal with, etc.

I wish you all the best and hope you are able to determine what is best for you soon! While you are deciding, you can take some time and read through our Endometriosis Resources and see if you find some help there as well!

Take care! S

Thank you all for your responses they mean a great deal to me.

Weiser---- I have a great endo specialist. I actually have seen two of the top two in ontario. One couldnt do my surgery because of the hospital merger and because i had previous bowel surgery he would need a general surgeon, so he sent me to his understudy, which is very good. He removed everything off my bowels, bladder, kidney, ovaries, etc... He knows what he is doing because many doctors wouldnt have even touched the bowels because they would be afraid too. Besides his crappy bedside manner i think knowledge wise he is awesome and i do trust him.. He is the 7th doctor i went to and i knew after my surgery that he was the best. I would however would love to have my surgery done by dr Redwine, but i dont live in the states for that to happen.

I am definitley weighting my options and this decision i make isnt an overnight one, i understand all consequences and by the time I am 35 so 4yrs from now I will have made that decision. It will be just as hard to make it than as it is now. I will never be certian if it was the right choice for me, but i can guarantee i do not want to live the rest of my life like this either. I know my body and I am so intuned with it, that i know nothing will work, probably not even a hyster. So who knows what will happen lol.