Coping with Endometriosis

Updated on January 29, 2008
K.S. asks from Austin, TX
27 answers

Are there any other mama's out there suffering and in pain from Endometriosis? Sometimes I feel like the only one but I know I cant be alone. I feel like I have tried everything to no avail. I'd have to write a book but in summary: Hormonal treatment (my body didn't tolerate), Chinese medicine (1 year of accupunture and herbs), Naturapathy (supplements and homeopathic), detoxing, diet changes, ..... this list goes on and on including 2 laparascopic surgeries (2004 & 2006). I used to be an active healthy vibrant woman and always took good care myself. Now a trip to the grocery store can be exhausting. I find The pain alone from this condition has made me sedentary, gaining weight, and also had to quit my (well paying) job. The good news is that sometimes our train needs to be derailed, and this miserable condition has "forced" me to grow in ways I would have never otherwise and deepen spritually. While I have learned to be grateful for the many changes it has brought(I sometimes refer to it as my 'gift"), I still want to find a "cure" or something so I can feel better.

2 moms found this helpful

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

So What Happened?

Wow, thanks for sharing all your experiences. I read each response and did research on the one's that provided info. It was encouraging to read stories of life after endo. and amazed by the stories of post hysterectomy happiness. Most of the research I read was that hysterectomy was no guarantee and numbers of women were still not getting relief and then dealing with post hysterectomy complications.
I felt a sisterhood in knowing there are others that know and understand what I am going through. I am still torn in that I have tried so many things and NOTHING has made a difference. It is as though this ENDO has a life and mind of it's own and laughs at my attempts. At the same time I cannot fathom a hyterectomy, thus far. I rather like my uterus and want to keep it around. The pain makes you so vunerable your willing to do whatever it takes. I'll keep searching but so far the only big change is that I getting deeper into debt.
Please keep your emails coming in, it will be a wonderful support and resource for others, and I am already so grateful.

Featured Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.L.

answers from San Antonio on

Wow! I felt like I could have written this. I never knew someone else felt this way about the disease. I would love to talk more sometime.

1 mom found this helpful

More Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.W.

answers from Amarillo on

You didn't say how old you were and how old your children were. I suffered many years with it (from teen to older). Certain exercises were great for about four months and then the cramping would come back. The only comfort I had was for about 8 months after I had my daughter. Some women I guess are predisposed to this. When I found my current OBGYN he explained what it was and since I was in my 40s then I decided to eliminate the need to have a period. I have felt great ever since. Should you go that route, keep an ovary or two and that will eliminate the need for HRT which is not always the best alternative. Check with another doctor he/she may have new information for you. S.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.M.

answers from Dallas on

I had a laproscopy and hysteroscopy (plus the other treatments like antibiotics, birth control, etc) and NOTHING worked!

I had a hysterectomy almost a year ago (1 year in March) and I feel like I finally have my life back! I was so depressed about having one, I really wanted the "opportunity" to have more kids, but I knew I really needed it (plus I have 4 kids, lol). The first month I was mostly depressed from losing my uterus (kept my ovaries for now) -- but after that, things changed so much!

I feel like I finally have enough energy to play with my kids. I feel so much better, don't have to worry about the pain and heavy bleeding. Don't have to worry that I can't commmit to anything b/c I "might" have my period. I put off so many things and let my period run my life! Now I feel like I am finally free and no longer have to work around my period, I can work around my life.

After my hysterectomy, it turned out I did not have true endometriosis afterall, I had a fibroid in the walls of my uterus, but my symptoms were the same for endometriosis.

I know a hysterectomy is a dramatic solution, but if I had to do it all over again, I think I would have actually had it sooner. I still feel sad that I can't have any more children of my own, but I can always adopt :)

I hope you are able to find something that works for you :)

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.H.

answers from Dallas on

I know exactly what you are going through. I have had 4 lap procedures and had my left ovary removed from endo. I love my doctor for everything he has done for me. If you are interested in talking with him, you can reach him a thte Baylor-Grapevine Medical Center. His name is Kerry Neal. His number is ###-###-####. He put me on 21 day supplies of birth control to lower my hormones to keep it from growing. If you have any other questions or need someone to talk to who has been there, please feel free to contact me at my email address: [email protected]____.com

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

V.M.

answers from Lubbock on

I, too, had painful endometriosis but after 5 years and 3 doctors later I was finally diagnosed with it. I had doctors telling me it was my back and I would need BACK surgery to fix it. Well, after 2-1/2 years of trying to conceive I went to a fertility doctor who after testing and so on wanted to perform the dye test on me and clean out my tubes, in doing so she discovered my endometriosis and cleaned it out during the laproscopic procedure. I have not had ANY pain from it anymore and now have a beautiful 21 month old daughter. I know surgery sometimes seems really dramatic, but I would do it all over again for the relief....and the baby girl it brought us too of course!

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.T.

answers from El Paso on

I am glad to read that I am not the only one out there as well. I have been dealing with the pain for years, but have not undergone any specific treatment... though, now, I have finally found a doctor that will help me with this. I have also had to leave a well paying job because the discomfort has become more than I can bear. I am so afraid that I don't know how to be assertive enough with my doctor to truly explain what I feel. I will be back in his office on Tuesday next week to get results of an endometrial biopsy.

If you have any advise, ideas, suggestions... I'm ready to listen. I wish that I could offer more to you, but thank you for your post.

L.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.T.

answers from Houston on

I coped with this truly painful condition for a few years before my doctor removed my uterus. I thank God on a regular basis for donating my uterus to science. It will take you a few months to recover from the surgery, but after that you will feel like a new woman!! If your family is complete & you don't want anymore children, I highly recommend having the surgery. I am soooo glad I did!!!!
Wishing you well, good luck.
L. T.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

V.T.

answers from Dallas on

S K., you are not alone. A long time friend and myself have suffered from endometriosis for a long time. I know you mentioned that you changed your diet and I did until I realized that it need to be for long term not short term. For 30 days I stopped eating red meat, no caffeine (no caffeine tea is very good), drank more water, cut back on sweets, etc. For those really bad times a couple of motrin did the trick for me. Anyway, after 30 days I felt like a different person..Oh yeah don't forget to add at least 30 minutes of exercise at least three time a week to your schedule. Log it and you will see a pattern of when you have pain...I did it and it worked. I found that red meat was my enemy...I still eat chicken, fish, turkey, and when I really really have to have red meat I will eat a burger (its better when you cook it yourself). I know you have probably tried these things but you have to do it for at least 30 days to see the real benefit.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.M.

answers from Houston on

K. why don't you try Tahitian Noni Juice. If it has helped alot of people with Diabetes, arthritis, cholestorel, cancer, breast cancer, liver, kidneys, asthma, leukemia, osteoporosis, parkinson's, sinuses, stomach/digestion, stroke, thyroid, tumors, weight issues, acid reflux, addictions, energy, the list goes on and on. Why don't you give it a try. K. you can read more on this at www.nonihealthinfo.com and www.noniresearch.com. It will tell you all about the history of noni and how the people from French Polynesia have been using it for their well being.

I'm L.
I hope you feel better.
[email protected]____.com

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

F.N.

answers from Houston on

Hi K.!

I wish I could tell you that there is life after endometriosis. I sufferred from it for 10 years and had 4 surgeries during that time. I was blessed to have one beautiful little girl who is now 12 but finally had to have a hysterectomy when the endometriosis fibroid grew on my one remaining ovary and had to have it removed. They also removed my uterus because the lining from the uterus is what causes endometriosis. I can't begin to tell you how heartbrokren we were when we found out I wouldn't be able to have any more kids. I sufferred 3 miscarriages and went through all kinds of fertility treatments. It was exhausting and very depressing during those months when I thought I was pregnant. Then the times I was and lost the babies were very rough. My faith got me through this hard time and now 8 years later, I am happy and healthy. I do wish things would have ended better for me but I never felt good until after the hysterectomy. I pray things go better for you. I know your pain and I know you feel like you're the only one when all your family and friends are getting pregnant and having healthy babies. i have found that babysitting has filled the void and the desire to care for babies. I know their not mine but I love the babies I am blessed to care for and have been doing this so I can stay home and raise my daughter. I also have a very loving husband who reminds me that he married me and is happy that we have our daughter but that I didn't cheat him from having other babies. I felt that and it was hard to get over it!!!! I hope you know you are not alone and new medical discoveries are being found daily so there may be something new out there you can try. I wish there would have been something to offer hope for me but I hope there is something you can try. Still take a moment today to hug the 2 blessings you have been given and be the best mom I know you are. I will be available if you need to talk to someone who understands. email me anytime... [email protected]____.com

your friend,
F.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

T.R.

answers from Dallas on

Hello K.. I am 37 yr. old, have a wonderful husband, and 2 wonderful children(2yr old and 10 yr. old). I suffered with pain for years, since age 17yrs. I had 5 laparoscopies, one of these with a laparotomy(a c-section cut) because of all the scar tissue and adhesions. Miserable all those years as you know. It seemed after kids it only worsened. When my 2yr. old was 6 mths old, I was nursing(which is suppose to suppress endometrium growth), but not in all cases, I was starting to have the worst pains ever. When he was a year I ended up lying around, unable to function normally. Tired all the time, felt weak, nauseated, couldn't keep food down, always in pain. I thought I was dying, thought of all things it could be. I was in and out of doctors,specialists and testing(had colonoscopies, EGD's, CTscans, MRI's),nothing was pinpointing it. Finally it hit me, it was the endometriosis ,went to my Gyn dr. and we ended up doing a Hysterectomy. BEST thing ever. It cured that problem. The only thing odd we found, was that all those years they were saying "Endometriosis", actually they were wrong. It was a condition that can mimic the S/S of Endometriosis and misdiagnosis can occur. This condition was called Pelvic Congestion Syndrome. It is when there are many varicose veins feeding the uterus . It's very painful. Check it out on the web. If the doctors are not able to help you and can;t figure out why anbd keep saying "let's do a Laparoscopy to release adhesions", Question! There might be something else that could be done. Good luck. I believe you are having real, explainable pain. I had a great ob-gyn in Ft. worth, that I worked with for years who was the one who helped me, after being to other ob-gyns.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

B.P.

answers from Houston on

I suffered with it from the time I was 17 until I had a hysterectomy at 43. I did everyting you mentioned plus multiple surgeries to correct it. Nothing helped. I have no advice to offer you except to say you are not alone and if you need to talk / vent, bring it on. I know first hand how absolutely miserable it is. I was warned that the hysterectomy may not fix it but it has been so much better since then. I wish I had done it years earlier. Good luck.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.V.

answers from Austin on

I totally understand your frustration. I have had Endo since I was 16, now 26 so I have been dealing with this up and down battle for the past 10 years. I have had two Laproscopic surgeries also. I am due for my check up next month and am experiencing such sever pain now I almost feel like I am losing my mind. But I have been told several times from my Dr. that there was nothing do but to have another Laproscopic surgery or stop your periods for a couple months at a time and that was about it.

My husband always tells me "theres always something wrong with you, or whats new you don't feel good". I have always felt like I am a pretty healthy person and I am young 26 I want a better life. Another thing there is no cure for Endo only treatments, this is the frustrating reality. You might want to try maybe meditating. I 'm not sure if that would help. But I hope you feel better.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

T.T.

answers from Dallas on

KS,

I thought I had already responded to your post, so forgive me if I already have.

I suffered for years with endo. I had pain for years before I knew I had it. My one lap helped for a little while, but definitely not for long. I think the most relief I had was when I was preg, but it came back worse after the birth of my 2nd child.

I know this sounds extreme, but I finally found relief when I had a hysterectomy this past November. Now, 3 months later I have no pain with sex, no aching when I stand around and I have much more energy. My doctor told me that there was endo in the walls of my uterus which no lap could had fixed. We did a complete hyst. b/c my doctor said that leaving my ovaries could also leave sources of pain. Honestly, I don't miss them. My sex drive is up and all I do is slap on an estrogen patch once a week to keep my hormones up. EVERYONE told me that a hysterectomy was the best thing they had ever done, now I believe them.

Anyway, I don't know how old you are or if you are done having babies. I'm 40 and knew I was done, so it was a no brainer for me. (I feel like I can be a better mom now.) When you get to the point you are done having babies you may want to talk to your doctor about it. YOu are definitely NOT alone!! Good luck to you!

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.S.

answers from Dallas on

Have you looked into natural (NOT synthetic) progesterone? It comes as a cream - but one company (Solvay) makes it in oral form.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.K.

answers from Dallas on

Yes, suffering. I'm on b.c., which helps for now and somewhat, but I'm scared to death to go off of it because the pain is so incapacitating when I'm off of it. I hate the side effects from the b.c.- can't stop gaining weight! I had one lap last year and it only lasted to help with the pain for 6 weeks. I'm really hoping my insurance will cover a new lap at a Doctor that I've heard amazing things about. Dr. Andrew Cook in Los Gatos, California. Apparently he gets it all out and you're "cured" for many women. They go to him from all over the world. You can check him out at drcook.com. I hate the fatique that comes with endo! So hard with a little one in the house. Luckily he's a good helper and plays well by himself. I would love to get together in a support group but haven't found one. If you'd like to get together to lament, please let me know. Glad to hear that you've grown closer to the Lord in dealing with this disease.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.L.

answers from Houston on

Dear K., My heart goes out to you because I suffered with it a long time - probably many more years because it wasn't diagnosed until in my 30's trying to get pregnant. I pursued infertility treatments and then adoption, knowing that God would provide the best answer. 3 months after a very painful laparotomy, we were selected to be our daughter's parents. (The botched lat. continued cause pain, etc. and I finally had a hysterectomy at 41.) Not the solution you might want, but it was the best for me. We then we blessed to adopt our son, and he was definitely worth waiting for ! I know all about the depression, the medicine to helpw/pain, the weight gain, the depression over the weight. There are many theories on diet, exercise and I hope you continue to pursue in order to stay healthy and feel good. Good luck. A.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.F.

answers from Austin on

I went through this horrible emotional and physical pain as well, for about 12 years. I could not tolerate any hormonal treatment and was taking pain pills that made me depressed and fuzzy. This was no longer an option as I am also bipolar and you NEVER put a patient like me on hormone therapy if it can be avoided. I think over the years I've had 5 lap. surgeries (with and without D&C) to remove cysts, etc. They finally performed a LUNA (lateral uterine never ablation) with the last lap., which cuts the nerve leading to your uterus. But that only helped for pain inside the uterus, which does not address the majority of the symptoms of endometriosis. The only relief I finally got was a hysterectomy. I had to wait until we got through two pregnancies and was sure I did not want to have more. It seems radical to some, but is a verified option of treatment for this disease once you have tried everything else. I was only 32 when I had mine done, and it made a world of difference! They left me the one ovary that looked good and removed the necrotic one. They did vaginal, so the recovery time was only a couple of weeks. Every now and again, as I still ovulate from the one side I will get some cramping - maybe 2 - 4 times a year for a few days, but that is really it. Medication is necessary to try first, but when not effective, I suggest speaking to your MD about other surgical options.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

H.G.

answers from Odessa on

Since you have children, you might take to your doctor about removing the works. It's almost day-surgery at this point, not nearly the operation it was 20 years ago. You might want to check with other women who have had the procedure, but other than recovery time, it does not affect the ability to have or enjoy normal sexual activity. It does, however, put you into early menopause which can be (but isn't for everyone) uncomfortable with hot flashes, etc. There is no reason for weight gain unless you don't eat properly or exercise. If your endometriosis is debilitating such that you are in pain much of the time, the small side effects of removal may be a welcome change. My doctor says that endometriosis doesn't cause uterine cancer...but the build-up certainly provides a easy target. ANY surgery, especially elective, should be well advised and well considered, but you really should discuss options with more than one doctor. If you decide to do this, be well advised about hormone therapy to treat hotflashes, etc. Without question, hormone therapy definitely increases the risk of breast cancer (which happened to me), so again be well informed, but do get the help you need to get your life back on track.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.R.

answers from Houston on

I too have suffered from the pain of endo for many years now and have had all kinds of stomach problems that a specialist in houston has now linked to the endo. I took lupron shots daily for a year that stopped my period and that really seemed to help but within 6 months of stopping the shots, I was hurting again. I have also taken bc pills so that I would not have a period (start a new pack instead of taking the sugar pills) and that helped for sometime too but not long after I started that treatment we decided we were ready for kids and I had to get off bc. I also followed a very strict diet (due to stomach problems) and since I have no longer followed the diet I can tell a difference in the endo pain - more severe.) I am currently very pregnant with our third child (pregnancy doesn't really seem help clean me out or easy the pain for anytime.) I am considering having a hysterectomy sometime in the near future. For a long time, I thought that when I was through having kids (and belive me I can't handle anymore than 3) that I would immediately have one but now I am not so sure. I will be 29 at the end of this month and am not sure that I want to have the whole menopausal experience just yet so I want to do more research before I make a decision. Anyways, I think that from all that I have read and heard, that a hysterectomy is pretty much the only longterm solution. I know this wasn't really helpful but wanted you to know that you aren't alone and to thank you. I use to feel like I was just some big baby who couldn't handle it and hearing that you have similar problems and reading the responses of the other women, let me know that I was not alone.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

E.H.

answers from Tyler on

I have a friend that had endometriosis about 17 years ago
back then she tried to get pregnant, but couldn't. Eventually she had to have a hysterectomy and the doctor removed her ovaries...the growth inside the uterus was attaching now to other vital organs so she had to have surgery. My advice is, If you are not planning to have any more children you might consider removing your uterus keeping the ovearies if they're
still functioning ok, and before your situation gets worst.
I'm glad that spiritually you have grown, it's better this way. No time to be resenful and bitter! God bless!
There's always good to come out when you love God!

Praying for you!

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.C.

answers from Austin on

K., I can really understand some of what you must be feeling. I had Endometriosis for several years before my laparoscopic surgery about 15 years ago. I have managed to keep it at bay through a variety of changes that I made after surgery. Number one, diet. I cut out all caffeine and heavy dairy (ie cream, milk, heavy cheeses). No coffee, no sodas with caffeine. Part of the reason this helped me is because caffeine and some dairy can really affect the ph levels in your body and in my case, my ph levels were affecting my hormones. Since endometriosis has been found to be strongly linked to hormonal irregularities, it helped me a lot. I found that within seconds of having coffee with cream, I got that old familiar stabbing pain. Second, I did regular acupuncture plus chinese herbs (get on a really good blood building formula)for 2 years. If you get the powdered herbs (Qualiherb is a good company) and make a hot tea twice a day, you're body will thank you. The important thing is to stay consistent, don't stop the herbs or back off the diet changes. Lastly, and maybe most importantly, I found my endometriosis very linked to my emotional self, particularly my sense of worth and self esteem. I began to go to therapy (you may have to try a few therapists before you find the right one for you). I began to really look at my own issues and root causes for my sadness and pain. That's when the endometriosis finally high tailed it out of there for good. I know how challenging this illness can be, if there is anything else I can be of support with please let me know. All the best to you, sweetie.
About me: I am the mother of a 7 year old girl, 3 year old boy and am 10 weeks pregnant with my third. Married and doing well.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.B.

answers from Austin on

Check out arvigomassage.com
It can help.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.B.

answers from San Antonio on

I'm sorry about your pain! I have terrible endo and I had one laparoscopy and 2 hysteroscopies a few years ago. I am trying to avoid a hysterectomy right now, but I'll probably end up doing it later. You said that you couldn't tolerate hormone therapy, so maybe you've tried this, but my obgyn put me on Yaz all the time so I don't get a period at all. She said I can do that until I'm 51. The side effect is that taking BCP's without a period can give you constant bleeding (I have breakthrough bleeding every day), but I have decided that the inconvenience of the bleeding is much more tolerable than the terrible, awful, unbearable pain that I used to get every month for about four days, and sometimes the pain would happen twice a month. Different pills can be tried, but I had loads of breakthrough bleeding when I was on the regular pill, so I'm not holding my breath. I hope you find something that works for you!

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.S.

answers from Wichita Falls on

Hysterectomy?

If your family is done, that should get rid of the problem.

S.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

B.S.

answers from Dallas on

I have had endometriosis too and the pain is terrible...of course laparascopy was the only thing that relieved the pain. Would you or your doctor be willing to do a hysterectomy? My doctor told me this is the only "cure". Since for some reason they cannot find another way besides pregnancy to make the symptoms go away. I ended up with a partial hysterectomy not due to the endometriosis but a complicated pregnancy and delivery, but the pain is gone. I had another friend who was going to have a hysterectomy to cure hers because it was so severe. Sorry I don't have any better advice.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.S.

answers from Dallas on

I also suffer with this too. I have been through many of the same treatments. For some reason mine has not been bad since I got pregnant with my 3rd child over 6 years ago. I was also having severe migrains too and went away with her so she is my miracle child which healed me. I know exercise on a regular basis is very helpful.

For Updates and Special Promotions
Follow Us

Related Questions