Another newbie - 26 yrs old and considering and hyst

I'm looking for information and support from anyone else who had a hysterectomy around my age, without having any children or being in a relationship to consider children.

I have chronic endometriosis (stage 5) and have been in hospital 3 times in the past 6 weeks. My first diagnosis of endo was made at the age of 18 after having suffered pain since I was 13. My next lap took place approx 2 yrs later and again severe endo was discovered. I then underwent my first course or Synarel which was then repeated with another gynaecologist about 12 months later.

Six weeks I was admitted to hospital via emergency for what turned out to be a ruptured endometrial cyst on my left ovary. Five days later I was re-admitted for a minor infection, despite being given antibiotics in surgery. Nearly three weeks ago I was again re-admitted through emergency for more abdominal pain and an endometrial cyst had appeared on my right ovary, since my previous surgery.

My gynae has operated worldwide having spent time in both the UK and the US and says it's the worst case of endo he's seen. That's a really scary thing to contemplate, as is the thought of a hysterectomy, but I don't know if I can continue on Synarel indefinitely, or not knowing whether a period will again put me in surgery.

Thanks for listening to me prattle on

Kathy

{{{Kathy}}}

I am not your age, but I wanted to jump in here and just say I am so sorry to hear about your troubles!

You have come to a great place to share experiences and support, and although your condition is rare at your age, I have seen other sisters your age here in the Land of Hyster who have been through similar circumstances.

May I suggest perhaps further exploring your situation and your options with your Doctor? He may be able to make recommendations based on what he knows of your condition coupled with how you feel inside about having children, etc.

Hopefully there will also be someone closer to your age along to reply to your post and share with you her feelings about her own experience.

Best of luck, sweetie - we're always here to 'listen' and offer support.

It's never wise to trust ONE doctor with this decision. I, myself, saw TWO world-reknowned "experts" on endometriosis and two other doctors who are considered "the best around" before making my last decision on whether or not to have an additional surgery after my tah/bso left me in MORE pain than I had prior to surgery for endometriosis. It wasn't until I saw the fourth doctor that I found the right answer for me. That's the key, finding the right answer for YOU. The doctors will never have to walk in your shoes once the surgery is done. They won't have to suffer your pain if you chose NOT to have the surgery either. It is YOU who must research this surgery (uterus ONLY or uterus and removal of ovaries as well) to get an accurate picture of what will happen to you if you have the surgery. Start a pro-con list right now. Start reading and list them all -- the pro's and the con's. Also list the doctor's words in a pro -con list (each doctor you see) and then when you've collected all the opinions and done ALL the reading make your decision. This is not a life or death situation. You're in alot of pain -- I know that feeling, I've been there and unfortunately am still there from time to time -- but DO the research. You can't be sorry if you KNOW what to expect.


There are many other options here - continuous BCP's, GNRH antagonists, a new drug that will eliminate periods but won't give you menopausal symptoms (called affectionately "the monkey drug"), and a new procedure that uses hydrogen gas to burn off endometrial lesions. Investigate those as well....good luck with your dicision and do what's right for YOU.

Thanks for the info Adrite. I'm working my way through the list of resources you posted - most I have read previously as I was diagnosed and have been suffering from this condition for over seven years now.

My main problem is the cost of treatment at the moment. I'm in Australia and our government will only subsidise one six month course of GnRH antagonists. I am currently on my third in five years and was lucky to have a second course subsidised. Now it's up to me (an dmy health insurance fund, which incidentally I work for) to pay the cost. Unfortunately I'm going to end up approximately $700 out of pocket per year, not including the cost of estrogen add-back and doctors' fees.

This is the 5th gynaecologist I've seen and the third who is a specialist in this field. I'm looking forward to 7 December when I will get a chance to sit down and talk to him in depth. There's so much I want to do with my life and at the moment I cannot do that because I'm stricken either by medication side effects, or end up in surgery each time I have a period.

In many respects I feel comfortable having made this decision, even though I haven't fully discussed it with my doctor yet. He has said it's an option, and I'm open to other suggestions, but I am conscious of the cost in GnRH antagonist therapy.

Endometrial lesions do give me some pain but it's the endometrial cysts that are of the most concern, and they seem to be occurring every period.

Again, thanks for the info Adrite. I look forward to hearing more opinions on the board.

Regards

latte

But here in the US I paid (or rather my ins paid) $700.00 per injection! :eyes: That's not including the dr fees and add back estrogen. I hear you on the $$$ thang. You have to do what's right for you and what will bring you the most comfort and peace. Good luck to you!

Unfortunately for you guys, but fortunately for me I'm happy to live in Australia with our healthcare system. I'm still not too sure on how the US system works and it's something I'm going to look into, for curiosity sake. If anyone can forward me information that would be great ( eg websites to look at)

Kathy

I am not much older than you are. I turned 31 in Sept and I had a TAH (keeping ovaries) in Aug. Albeit I have not landed in the emergency room but was advised to go on several occasions by my doctor. At the time I didn't have any health insurance. That's a huge problem here in the US.

Finally I was able to afford the insurance my employer offered and boy did I take full advantage. So did the doctor I had. He just kept blowing me off ( more office visits at $65 each), a 3 month course of birth control pills, and a failed endo ablation that cost almost as much as my hyst.

Then I found a wonderful new doctor who took the time to listen and thank God he believed me and scheduled surgery.

Now I can participate more in my boys lives and make it through a day at work painfree.

Best of luck with whatever happens.