Endometreosis HELP!!!!

~Nicole~ · 03-01-2005, 02:30 PM

Calling all sufferers of Endometreosis (sp)

My friend has been DX and I did a search and read alot of the previous post about it. I have 1 question.....is a hysterectomy more of a last resort sort of thing, She is concerned and her Dr gave her that option or taking hormones for 6 months to cause "menopause" then see how things go after that. Does this sound right?

Any thing will help.

Thanks

Nicole

leahdione · 03-01-2005, 02:52 PM

I was diagnosed with endo about 3 years ago. My doctor put me on hormone shots for 6 months. I then went off and had to go back on due to the pain I was having. I did just find out that there should be about a 6-9 month gap between going on the hormones. My doctor did not recommend hysterectomy. If she is done having children or did not want children then that would be an option she could ask about, but I do not think it is used unless there is too much bleeding, or something like that. Hope this info helps.
Leah

~Nicole~ · 03-01-2005, 03:08 PM

Her daughter is one, and she does want more children. Just not right now. Thats why the hysterectomy is not really an option she is looking for. Thanks for responding. I am just hoping to get some opinions to help her out.

Good luck with your treatment!!!

Nicole

Pattyannruss · 03-01-2005, 05:45 PM

A hysterectomy should not be considered until she has tried every treatment available for each issue.

The top 2 reasons to consider having it done are Andeomyosis(sp?) and/or untreatable fibroids inside the uteris causing hemoraging(non stop bleeds)

Endo it's self canbe treated in most causes with hormone treatments. The main type is Lupron shots. These things can cause alot of side effects that she should read up on. But it can give her the chance of concieving she wants.If unable to concieve naturally.

The down side is the surgery will not cure PCOS or ENDO. Many women can have a great reduse effect of symptoms. But with any surgery you can develope adhesions. These then can cause or be caused by endo.

Endo is fed by estrogen, so if you are an estrogen dominant woman, you can still have some endo with your ovaries gone.
With the ovaries gone, it is very unlikely to have reacuring endo.
But you can develope other hormone issues not listed her(most drs fail to tell you)

I had a total done 2 years ago.
I don't use HRT/BCP because they cause more issues than not having any. I did just start Zoloft because I was having heart palpitations. It took care of that for me. It also helped my fatigue.

But wth surgery I still have adhesions that can become painful at times.

It is a long road and I hope you find all the info you need for her.

Patty

~Nicole~ · 03-01-2005, 06:25 PM

Thanks Patty......She has been through soooo much. She had thyriod cancer last year and now this. And she has this little baby girl. I feel horrible..

So I told her about the site, even though she does not have PCOS. I know there is tons of info on here foe endo also.

Thansk again!!

Nicole

terilynn112 · 03-02-2005, 04:01 AM

there is a group I belong to on yahoo called angelswithendo@yahoogroups.com they are wonderfully knowledgable women. They've been very helpful to me, as has pattyannruss's posts. If you search thru her posts, you'll find TONS of information here. Or feel free to email me I'll send you the links I've found. My private email is craftymom@stny.rr.com.

Hugs

Jmacfeely · 03-02-2005, 07:54 AM

Hi there,

A good friend has Endo and was in constant pain...at times couldn't walk. She had been through 2 operations and last year she went to a naturopath...great results. It was tough but she feels great. Some foods were triggering pain. Naturopath might be something to look into. Some medical plans cover the costs.

Hope this helps.

katie123 · 03-01-2008, 05:49 AM

Hi,
My name is katie and i have had endo for the last 14 years. After 6 Laparoscopys and a Laparoscapic insision, i too have been put on hormone treatment (dimetriose), which isnt doing too much for me. One of the specialists i have seen suggested a hysterectomy, but all the others have been against it. Nothing is a sure thing with endometreosis, what works for one person may not work for another, a hysterectomy is not a guarantee. It comes down to personal choice, and what you feel comfortable doing. I hope your friend is doing ok!!!!

Stacie M · 03-01-2008, 06:47 AM

I have endometriosis. I wasn't diagnosed until my laparoscopy in 2006, although my symptoms dated back to early teens/puberty. It is so incredibly painful...

My doctor lasered as much as she could during the lap. Then, I started on BCP's (Ortho Tri-Cyclen LO) to help prevent new spots of endo developing. I have had great luck with surgery/BCP's. It has been almost two years and I am probably at least 75% better than I was prior to treatment. I never knew periods could be like this! I used to spend a week in bed, on pain meds, crying, and just wanting to scream. Now, my cramps aren't too bad and I don't have the pain I was having during sex.

DiamondInTheRough · 03-03-2008, 01:01 AM

Wow, I didn't realize endo was so hard on a woman during her periods...

Stacie M · 03-03-2008, 09:27 AM

Quote:

Originally Posted by DiamondInTheRough

Wow, I didn't realize endo was so hard on a woman during her periods...

Endo can be horribly painful. For some women, it can be debilitating. I had always suffered from terrible pain, so I was amazed at how much better I felt after surgery.

comfyfeet · 03-03-2008, 11:32 AM

I have been diagnosed with Endo, but I dont have periods. Does anyones else have this?
I am going to talk to my doctor about the possibility that I have PCOS, can anyone suggest how I can go about this? It took me over 5 years to get them to perform a laparoscopy. They seem to have the response of " just toughen up "
Stacie, I'm so glad that worked for you. I have the pain and its crippling at times.

I was told about the injections as got alittle worried, afetr some digging found out that while you take them it puts your body into a menopausal state, but when you come off them after x amount of months ( sorry cant remember the figure ) your body returns to normal.

But a hysterectomy should be the last option. There is a good chance that even with surgery there will still be Endo.
Tell your friend not to worry ( for one I have noticed a direct link with stress to my pain ) there are other options, she just needs to push her doctors.
Mine at least are very slow, and dont realise how much this takes over your life.

All the best
TTFN
x

mdgraft · 03-04-2008, 12:55 AM

I was just diagnosed with endo less than 2 weeks ago after a laparoscopy. I haven't gone for my follow-up yet, though, so I'm not sure what the doc will recommend for "treatment" since we are ttc. I feel like my body is completely betraying me and I have no idea what to expect from the combo of PCOS and endo together.

Nicole- I'm surprised your friend was given the hysterectomy option already, especially considering she wants more kids someday! I don't know what stage her endo is but I would definitely think that would be reseved as a last resort (I've also heard that its no guarantee anyway). I'm sorry to hear that she has been through so much!

Stacie M · 03-04-2008, 08:54 PM

Quote:

Originally Posted by comfyfeet

I was told about the injections as got alittle worried, afetr some digging found out that while you take them it puts your body into a menopausal state, but when you come off them after x amount of months ( sorry cant remember the figure ) your body returns to normal.

I know a lady who has severe endo and gets the Lupron shots, which basically puts you in a menopausal state. She went off of the shots due to a financial problem and got PG right away (had a healthy daughter). She then went off of them several years later to purposely TTC and had another healthy daughter.

alwayzrn · 03-04-2008, 09:04 PM

I was diagnosed with endo in 2006 and was put on Lupron Depot which is the medication that puts you in menopause...I have been off of it since March of 2007 and I have not had the same pain since. It also helped to shrink my fibroid tumors. Because of my fibroids one day I will probably have to have a hysterectomy but my dr has stated that he wants to wait until I have had some children first.

hth

Adrianne