endometriosis

Crystal - posted on 04/09/2010

Has anyone found any possible natural ways to ease endo pain and discomfort? ive done ice, heat, elevate hips, exercise, diet control. I try so hard to not take anything other then advil or tylenol. I'm not ready to have a hysto yet, but i also dont want to live of off pain killers. it isn't and option for me with a daughter with special needs. i would be have to just get rid of the sharp pain and just deal with the dul pain. any suggestions of ideas would be great im open to your thoughts

thanks for your time
crystal

Chelsey - posted on 03/03/2010

Latest Update (see up to previous messages)
Hi Ladies,
Well, i had my big op to remove the endo from my bowel and ovary, and it went well, thank god!! It took about 5-6 weeks to recover but I'm doing OK now. Going back to see my specialist next month so I'm hoping he'll be able to help with the next step....finally getting pregnant, tho I don't hold out much hope tbh!
I had my first period after 8 months (and a course of decapeptil) and it wasn't too bad. I didn't have any pain in my bottom area so assume that part of the op was successful. I'm praying now that the endo stays away for a bit longer this time, I'm so fed up with operations and being prodded and pulled about.
How's everyone else getting on? Look forward to hearing from you all
Love Chelsey xxx

Stephanie - posted on 02/01/2010

I have had endometriosis since i was 17. My mother had it, my aunt had it, and my grandmother had it. When the doctors confirmed that I had it they only gave me two options to deal with the pain, go ahead and get a hystorectomey or go on birth control. I tried birth control but that didn't work. It just made me sick. So I tried a different option. I changed my diet. I started eating healthier and working out. I had always been an overweight person. As I started losing the weight the pain decreased. Now whenever I have bad pains I take an over the counter pain killer like excedrine and I walk. Even though it kills me at first it eventually starts easing up and goes away. I know every woman is different and that different things work for different people. I just hope this helps at least one woman ease her pain.

Stephanie - posted on 01/17/2010

I was in your exact shoes. i have always had pain since I first got my period. I'm not 19 about to turn 20 and was barely diagnosed in june 2008 when i was 18 years old. my dumb doctor wanted to make me go through menopause! can you believe it at 18? i said no, i'm going to try to have a baby before i do that and lose all chances of having babies. he said i would probably have to get a hysterectomy in the future as well. I hope al is going well for you. I'm not in as much pain anymore, I still hurt a lot but I guess after you cope with so much pain, you learn to live with it.

Vera - posted on 01/13/2010

Hey Sarah! My name is Vera and i also suffer from Endometriosis stage iV since i was 16...i had by now 15 Laparoscopies, 2 stillbirths, 3 miscarriages and after trying for 5 years and 3 cycles of IVF i finaly have a baby boy (not to baby is turning 3)! U know i would love myself to have another baby, but it's hard, i actually just stopped last month with the Lupron (i have been taking the Lupron shot since i was 17) but my pain is just getting worst and i don't know for how long i will take it! Well hopefully i can get pregnant again and i definitely don't want to do the IVF again psychologically it destroyed me! I am happy for u, atleast u had a chance...i don't!!!
Hopefully you'll have a new baby soon...let us all know

Rachel - posted on 01/11/2010

Hi all. I was diagnosed almost 3 years ago. My husband and I decided to try for another baby and when I went off my BC I started having horrible pain and no luck getting pregnant. I had a Lapro done and they found the Endo. My Dr told me to try for another baby now or never since I will eventually need a Hysterectomy. We have been trying since before I was diagnosed and we did conceive in August 2009 and lost the baby October 2009. This has been a very hard loss. We are lucky to have already had a child before all this started. He is 4 now and he is our life. I was pain free for 3 weeks after the D&C for the miscarriage and then the pain started back up and even worse. I have yet to have a menstrual cycle. My Dr is putting me on the BC Yaz for 2 months to get my periods to come back and he said after I stop it I should be very fertile. I am hopeful yet scared to go through another loss. It is encouraging to hear some of you were able to conceive despite the Endo.

Niki - posted on 07/21/2009

Hi ladies. I am so happy that I found all of you. I was offically dx when I was 18 but they think that I have had it since I was 16 so that means I have had it for 12 years now. Just like all of you I have been through the ringer. To many medicines to count and I think it has been 3 or 4 surgeries now. You start to loose track after a while. I haven't found anything to really take the pain away. 800mg of ibupropin only numbs the pain if I am lucky. (Wow when I see that in writing I can't believe it). My husband and I finally had our daughter last year after many years of trying. So are so lucky to have her, never thought that I would be lucky enough to be a mom. It is so hard to explain to people why you are in such pain, they think that you are not telling the truth.

Chelsey - posted on 07/12/2009

Well, i had my next lap (see up to my previous message), and unfortunately the news isn't great!! They actually found some endo at the top of my bowel (the MRI didnt show it up) and on my left ovary! I now have to have major surgery with my consultant and two specialist bowel surgeons. I'm terrified tbh but i'm hoping it will help, as they're trying out a different procedure called excision. This is where the whole top layer of skin is removed, rather then just removing the adhesions. Its supposed to give me upto 5 years problem free! Lets hope so! Anyway, i'll keep you all updated. Hope your all doing ok, and getting something done to help with this horrible condition. thinking of you all.
Chelsey xxxxx

Jennifer - posted on 06/20/2009

You know I never had the pain till after my 5 yr old...when he was about 1 1/2. I also have an almost 11 yr old. It seems strange to develop this so late and thankfully I haven't had to endure the pain as long as some. The pain is horrible. whenit first started it was an hour a month. since then it's much longer and I think becasue i get so tensed up, i seem to feel pain in other places after the endo. pain. I had some surgery but the next month it came back. Glad to hear now that a hyster. wont work, hate to have it done in vain. Thanks for the info.

Chelsey - posted on 04/06/2009

Hi all,

Mine wasn't diagnosed beofre pregnancy, but since my first lap, my consultant thinks ive had it for years, hence the amount of damage inside!!  My MRI scan of my bowel and kidneys came back clear thank god, but i'm due for another Lap on 6th May to treat the rest!!! My son is 8, and i've been trying for another child for about 7 years with no luck.  My old consultant has since sent me to another, a endo specialist, and he is amazing, and i feel like i'm finally getting somewhere.  Once the Lap is out the way, we're going to spend one more year trying for another baby, but who knows, we'll just have to wait and see.  Unfortunately, i have a hell of a lot of scar tissue, but you never know, miracles do happen!

Good luck with your treatment girls, look forward to chatting to you more about your progress.

Love Chelsey xx

Jen - posted on 04/06/2009

Melissa,

I'm sorry that you had pain after having a child.  It must be rough for you.

For me even though I have 3 kids, that DH and I adopted from Korea, that keep me busy and laughing some days, I'm still sad that I couldn't get pregnant.   It's not that I don't love them or love them any less or different that the envisioned children that I might have had biologically.   I just wish that myself and others didn't have this disease ...

Melissa - posted on 04/06/2009

Hi Jen,



I'm one of the people who have the pain from endo after having a child. I didn't think I could have children, but fortunately did. Mine was stage 3, but no scar tissue, just adhesions. I also experience a lot of pain from ovarian cysts. I had a couple of cysts as well as adhesions on both ovaries and my dr felt that contributed to my not getting pregnant.



I am very sorry that yours was so severe that you had to have your uterus (and more) removed.

Melissa - posted on 04/06/2009

Hi Sarah! My name is Melissa. I had the same problem, I have suffered pretty much since I started my period. I started very young when I was almost 11 years old. I think most doctors thought I just liked to complain. Finally, but sadly several years later, I found a doctor who listened. I had laporascopic surgery to remove several lesions. I went 16 years with no diagnosis (except for dr's saying, some people experience pain with periods, it's common). The very next month I became pregnant with my son!



I am also thinking of having another baby soon and I worry so much that I will have probs getting pregnant. I think it is so sad that more doctors do not take this disease seriously. It has just been debilitating for me. I used to take so much ibuprofen that it would literally make me sick. I finally found a med that does help a lot - Ultram is the name and Tramadol is the generic for it. My dr mentioned to me and I said I would try it. It makes me really sleepy, but well worth the trade off. I think it is a muscle relaxer?



I think it is a mental thing for me, but drinking peppermint herbal tea & putting a heating pad in my lower back helps a lot. I was getting massage therapy for a little bit and that seemed to help. I need to find another therapist in my area.



It's so nice to chat with someone else who may understand what it feels like. It's very hard to explain to others.



Melissa

Jen - posted on 04/02/2009

I had nothing but problems on birth control (daily migraines, pms worse on the pill than off, and more).   I took myself off of them completely and used compounded progesterone cream twice a day CD 14-27.  I had 2 hour laser surgery January 2000 (Stage 3) with my obgyn, August 2002 (Stage 4) with an RE another 2 hour laser lap surgery, and July 2008 (Stage 4) with an endo excision specialist in Atlanta, Georgia (I'm in NYS).  With my last surgery, I was diagnosed with leiomyomata (uterine fibroids), endo on my uterus, ovaries, diaphragm and more, adhesions everywhere, adenomyosis.   I lost my uterus, cervix, left ovary, more than half of my right ovary, appendix (looked diseased so out it went).  I had a 7 hour surgery.  He spent the time to find the endo and cut it out of my body.  I have a spot left under my liver that he couldn't get at because either he would have had to deflate my lung or go in from the back to get at it...this was something that he wasn't prepared for.  My other surgeries were basically a waste of my time as it caused more scar tissue which caused me more pain.  I never got relief from my 2nd surgery. 

It's been a slow recovery but I feel well worth it.   I do mourn the loss of my uterus, ovaries and cervix still.

Hysterectomy is NOT a cure for endo but it is a cure for adenomyosis.  The two diseases are not the same thing.  I know of plenty of women who have had a hyst who only have endo and they are still in pain (as much pain as they were before the hyst). 

Pregnancy is also not a cure.  I know of women who have been pregnant who got temporary relief at best while pregnant (and that is if you can GET pregnant---I never could do to two block fallopian tubes due to the endo).   I had a less than 10% chance of getting pregnant with fertility treatment (not good odds).  After the pregnancy they are in pain again...sometimes worse than before.

As far as support  goes join the ERC (Endometriosis Research Center) for support and understanding of this disease.  They have been wonderful since being officially diagnosed in 2000.  

You can also read and sign the Stamp Out Endo petition to help us get a US Postage Stamp for endometriosis.

Jen

Sarah - posted on 01/30/2009

Chelsey the same thing with me, I have only been diagnosed about 2 yrs, i have been in pain for years. And I definalty agree there is no support for this disease and no cure other thatn hysotaecromy and/or pain killers, my pain has not come back full force yet since having my daughter but its getting there though and I am not looking forward to it, I have had a few doctors recomend birth control with a good dose of hormones in them and they can sometimes help, did yours go away when you were pregnant? Anyways talk to ya later

Sarah♥

Chelsey - posted on 01/18/2009

Hi Sarah

i've been diagnosed 3 years now, but my consultant thinks i've had it for years. Its a terrible condition to suffer with, especially if your a mother.

My son William is 8, and i've tried my best to explain why sometimes mummy is in a lot of pain, and he seems to get it, and can be very comforting and helpful if i'm having a bad time of it. I've just had MRI scans done to see if its spread to my bowel and kidneys, so i'm just waiting on them.

I was really pleased to find a community on this subject, as i dont feel theres a great deal of support out there for this disease.

Hope to catch up with you soon, and we can have a good chat. Take care

Chelsey x