HealingWell
Search Close Search
☰

Adenomyosis & endometriosis

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/9/2007 11:02 PM (GMT 0)
smurf

Hi Shanna,

congrats on your recent degree! I would *strongly* encourage you to talk to fertility specialists before closing the door on your reproductive future. I am of the opinion that if you ask enough times you will eventually hear the "yes" you want. I went through 10 years of physicians telling me I didn't have anything wrong with me as I got sicker and sicker and sicker. What one physician knows and understands about a given condition can certainly be improved upon by talking to someone better informed (keep this in mind as you practice medicine, the last word is NEVER spoken).

In that vein, why don't you google Adenomyosis Specialists/ Uterine Specialists. Try to find someone in your area. You may have to pay cash for a consultation - price varies from ($250 - $500) but get a complete workup. They often require cash because insurers don't cover this level of specialization. Look for someone who has treated your condition or similar many, many times (the phrase "I've done this surgery 1000 times" is a good starting place). If you tell a physician that you want to have children in the near future and they out-of-hand dismiss that possibility without explaining in excruciating detail WHY and if there is any freak possibility of you getting what you want - That's NOT THE PHYSICIAN FOR YOU.

I recommend my physician/surgeon and will be happy to share that information if you request it.
Posted 10/10/2007 3:30 AM (GMT 0)
I watched what my sister-in-law went thru with endo and let me say this she was in terrible pain. Her ins required her to take several different drugs before they would approve a hysterectomy. All this did was make her feel worse because one of the drugs made you feel like you were in menopause. She endured it all in order to get the approval for the hysterectomy. Once the surgeon got inside he was not prepared for he mess that she was in, the endo had attached to her bowels, so this short & quick job went out the window, try 3 1/2 hrs of cutting the mess loose from her innards. Had she gone much longer she could have developed a whole different set of problems per her dr. When he came into see her the 1st time she was coherent, he apologized to her because he had no idea how bad she was inside. Ladies don't play around with this endo. Susie
Posted 10/10/2007 3:22 PM (GMT 0)
Thanks for your reply,

It has been rough to deal with, and I will take your advice and go on google to look up a specialist. I am so frustrated, because this is not something I am familiar with, therefore I dont really know the possiblity of still becoming pregnant. Usually I have come across many diferent issues in the hospital and can say that I understand what can be done, treatment, etc. But I do see miracles happen everyday!!!!

I will go online now and try to find someone near my area. Thanks again!!!

Shanna

Posted 10/10/2007 3:51 PM (GMT 0)
Shanna,

I wish you all the best. I'm actually still recovering from my last surgery for endometriosis, but i'm atypical. I am 28 years old. I had my 1st surgery in 2004 and it was intended to be comprehensive, but i was a mess inside. 4 years later i'd finally had enough of living on valium and codeine (the buffered life) and made plans to have a total dissection and removal of the disease from my body. 3 surgeons, 9 hours later i was recovering quite comfortably in bed when i began to hemorraghe from the colon resection. It's been months and despite 5 subsequent procedures over this past summer (April through October now) this is the BEST i've felt in years. I have a future - I can marry my boyfriend because I'm no longer concerned we won't be able to have a family, I can go to graduate school - I am healthy and I don't have any prescriptions. The monthly savings on prescriptions and acupuncture have already paid off the surgery expenses! I also lost 45 pounds so I'm feeling quite fetching.

I hear from other women all the time and they are like I was: confused, ill-informed, almost-passive in approaching this disease and other "female" disorders such as fibroids. So often we try 'alternative' methods hoping to avoid surgery. I think naturopathic medicine has a place, it's for healing, but we can't heal unless we get that vampire tissue out of our bodies. It does not leave willingly. Straydog was so RIGHT when she said we should not take Adenomyosis or Endometriosis lightly. It will torture you to death. It ate right through my colon. It nearly killed me. I nearly let it because I was seeing physicians who just didn't KNOW ENOUGH to take the disease SERIOUSLY.

Here is a website I like to visit because of the research they have done on the diseases that affect women's reproductive systems. http://www.nezhat.org/health/disord_endometriosis.html - I have found that they have articles on the range of problems, up to and including my specific host of issues, which, again, are definately outside of the norm.

Wishing you the very, very best!

Camille
Posted 10/10/2007 5:23 PM (GMT 0)
Hi everyone!  I have fibromyalgia but was looking at the CP post and saw this one.  I thought I would give you all my info on "female problems".

I started having pelvic pain shortly after my son was born in 2000.  It started with ovarian cysts and had a laparoscopy to get rid of of them.  When they did the first surgery they found what a mess I was.  Being that I was only 21 at the they didn't want to do anything major.  Over the 5 years I had pain constantly due to recurring cysts, endometreosis, and fibroid tumors.  I went through about 5 OBGYNS, and 3 more surgeries, and an injectable drug that put me through meopause (Lupron).  Finally last year at the age of 27 I was referred to University of Michigan pelvic pain clinic.  I had a great doctor there and on my first visit she recomended that I have a hysterectomy. So thirty days later, October of last year, I had the surgery.  They removed my uterous and one ovary.  I kept one ovary so that when the Lupron wore off (in about thirty days after final injection) my hormones returned to normal and was out of menopause.  They were able to do the surgery laprascopic so I didn't have my entire belly cut open.  I don't know that all places can do it like that.  I had already had a c-section with my son so it was the best option for me. 

Anyway...bottom line is I feel much in that department.  I have no more periods which is great.  I was not going to be able to have any more children so the surgery didn't make a difference there.  If I had to do it all over again I would have demanded a hysterectomy years earlier.  SInce I still have the one ovary I have had a couple cysts in the past year but they have went away on there own and not nearly as painfully as before.  I know for some people losing their uterous is a major decision.  I however look at it this way.  Lose a couple organs that I don't need in order to live or not have a life because of the pain they are causing.  Of course if you are wanting children and don't have any yet I feel for you and I to would have went to any extreme to fix the problem in anyway.  On the other hand.  Since I still have one ovary that has eggs and a husband that functions fine I can always look into a serogant (sp) if I find myself yearning for another child.

I don't know if this helps at all but I thought I would share incase it does. I guess I am not the only 28 year old that has had all these problems.

Good luck to all!

Wishing you pain free days,

Marrie

Posted 10/10/2007 5:57 PM (GMT 0)
Hi Marrie!

So great to hear from you! I knew i was not the only 'younger' woman to battle for my health like this. Thank you for drawing attention to minimally invasive techniques such as laprascopy - all of my surgeries - including an Ileostomy - were done laprascopically. I have two 1/4 inch scars on each side of my pelvis, i can wear skimpy bikinis if i like and no one is the wiser about my health history.

my surgeons were exceptional in their care of my condition and I wish that sort of experience for everyone. You made such a great point about 'losing an organ' vs. losing your life or your ability to enjoy life.

A lot of surgeons don't know how to address these problems laprascopically so they tell patients it can't be done. That's hogwash. It can and often IS done, but you have to find talented, experienced surgeons who are committed to treatment that is minimally invasive. The recovery times are significantly lower and easier with laprascopic surgery. The cosmetic effect is amazing.

BTW: I avoided Lupron because I was already experiencing menopausal symptoms (since I was 21) but I did take Danazol (testosterone hormone) for two months prior to surgery. It was a relief-giving treatment and I didn't have a single side-effect since my time on it was so short.

I also was committed to a liquid diet for 3 months due to the invasion of endometriosis into my colon. I know it's a sensitive subject, but I ended up with a rectovaginal fistula and to correct that problem i was given an ileostomy (a short-circuit of my intestines). If anyone out there is facing such a decision, I hope I can encourage you to get that Ostomy and get on with your life. I dithered for 4 or 5 days, I was so offended by the idea that I would live with a bag on my stomach but I LOVE THAT BAG and the relief it has given me! You can't know what it is to live when your life is full of pain.

Also, endometriosis compromised my urinary system. This disease can get into all kinds of trouble. I live with a catheter system but at least it doesn't hurt to pee any longer.

It's a lot, especially when you read, but I wish you guys knew how truly happy and relieve I am to be healthy. With all the surgeries and various devices that make my life easier I am a happy, healthy woman with a totally new Lease on Life.
Posted 10/11/2007 5:01 AM (GMT 0)

Hello to everyone.  I posted earlier in this thread, and I just now have had the chance to read through the replies.  Wow - there is a bunch of great information in this adeno/endo thread!! 

Straydog is so correct that these disorders need to be taken seriously.  I've lost count of the number of doctors in my life that have dismissed my endometriosis as a "normal condition".  I now suffer from severe and unrelenting pain from ovulation to the end of menstruation.  The endo is now obstructing a ureter, which is leading to bad flares of renal colic.  Also, endo is growing on my small and large intestine, but I'm not sure if it's penetrated the bowel wall.  For now, I can only manage the symptoms because my health insurance won't cover any pre-exisiting conditions until next year.

So, thanks again Straydog for emphasizing this very important point.  Always take endometriosis and adenomyosis very seriously because it can attach to and interfere with the function of many different organ systems in the body.

Also, thank you to all of the women that have shared their stories in this thread.  It helps to know that we're not alone when battling such frustrating diseases.

StomaGrrrl (Camille), I'd be very interested to know more about what intestinal symptoms you developed when your endo attached to and invaded your colon.  I have a myriad of intestinal symptoms that have now developed, and my doctor suspects that the endo has invaded my bowel as well.  I've never talked to anyone else that has dealt with a similar problem, so I'm not too sure if my symptoms match up.  I deal with very severe intestinal pain that is constant, and also, my abdomen blows up and looks pregnant before and during my periods.  I've read that this severe abdominal bloating can be a sign of bowel endo.  Did you experience that along with constant pain, or did you have different symptoms?

I strongly agree with the suggestion to find a good specialist.  You mentioned that you're willing to share the name of your doctor, so I want to ask if you'd mind passing the name along to me, if you can.

As I type this, my endo is on fire.  This pain is ruling my life now.  It is so inspirational to read stories of other women that have conquered their endometriosis and adenomyosis to live a life with less (or no) pain.  So, thank you again to everyone for giving me a shred of hope tonight.

Best wishes to each of you, and take good care.

 


Posted 10/11/2007 7:48 AM (GMT 0)

Hi, Luvdog,

I have a friend who got bowel endo, she experienced tremendous pain whenever she passed motion during menstruation, the pain was so severe that she always cried in the toilet. Doctor asked her to go for hysterectomy. Instead, she went for detoxification (Gearson therapy). After 8 months of detox, her pain is very mild now. I remember she also mentioned to me that she has very big tummy! She is in her 50 now, would wait for menopause to take care of these problems.

Andrea

Posted 10/12/2007 7:55 PM (GMT 0)
I forgot to add to my earlier post, I had a hysterectomy in 1987 due to fibroid cysts. My periods were very heavy and painful, I also had alot of pressure during my periods. It was awful the way I ruined bedding and clothes. Yes, I soaked everything.

Point is, my ovaries were left in, but they were not working and I was miserable, so was my family. I went to family dr who informed me alot of times after a hyst. the ovaries do not work properly because of the shock of surgery. I went on HRT and oh, what a difference. I have not buried my husband or kids in the back yard, thanks to HRT. So, ladies don't let yout dr tell you the ovaries will work. Susie
Posted 10/15/2007 7:44 PM (GMT 0)
smurf
Hi Luvdogs,

So sorry for the slow reply, I needed to take a few days to keep on recovering from the last surgery. In terms of symptoms I experienced: Pain. I experienced a great deal of bowel discomfort all of the time. Passing stool was towel-in-the-mouth-to-mute-the-screams painful. Gas was excruciating. Additionally, I developed food intolerances that were pretty broad - I ended up following a strict liquid diet, which was a blessing over time. After surgery I learned that I hadn't been digesting food. I also vomited a lot. Before my initial surgery I would simultaneously vomit and have diarrhea 3 or 4 times a day. Despite all of this, my body was swollen so I can't tell you if I had abdominal swelling during my period. I bruised very easily and my immune system was compromised. I received regular steroid/antibiotic shots to keep me up and running, in addition to 3-times weekly acupuncture sessions.

There are a lot of other symptoms, I'll have to look through my old journals and compile the various miseries I experienced. I'm so happy not to be that person any longer!

Oh, and my surgeon is Dr. Ceana Nezhat in Atlanta. www.nezhat.org. There are three Nezhat's (all featured on the website) and I've undergone surgery with two of the three. They each have different subspecialties and they are spread out across the country (San Francisco Bay Area, Atlanta, and New York). They also have a fair number of fellows who they have trained in their minimally invasive techniques across the country.

Please feel free to ask more questions! I'm happy to answer!

Best Wishes,

Camille
Posted 10/17/2007 12:33 AM (GMT 0)
6 weeks ago, I had a supracervical abdominal hysterectomy. It was one of the best things I ever did, and I was scared to death to finally do it! I have had four children, and with each one, my periods got subsequently heavier and more painful. I hemorrhaged after the last two when the placenta seperated very quickly after their births. I actually changed gyn's because I wanted to have a tubal ligation when I had my gall bladder removed and my gyn wouldn't do it with my general surgeon. I liked the gyn I was referred to so much that I stayed with him. I mentioned my heavy, painful periods to him, which got much worse after the tubal. My GI didn't want me on hormones because of the medications I'm on for Crohn's Disease, so that was not an option for controlling the bleeding. The gyn found out that I had Factor VIII Deficiency, which was probably contributing to the bleeding. He did an endometrial ablation and D&C, but it failed, and not long afterward, I started bleeding every day and having horrible pain during sex. Every month when I got my real period (it actually started coming every 2 weeks at the end), it would irritate my bowels so severely, I was completely miserable and couldn't leave the house for days.  The gyn gave me the go-ahead for the hysterectomy, but I was scared, and it took me a few months to finally accept the fact that it was the only way I was going to get any relief. I was able to keep my cervix and ovaries, even though I had a large ovarian cyst, which was benign. My pathology report came back last week, and I had endometriosis and adenomyosis, which the gyn said he suspected, but never shared with me! Now that I know what was going on inside of me, and now that I have no more bleeding or pain, I couldn't be happier with my decision.

Best of luck to everyone who is considering the surgery!
Posted 10/17/2007 2:12 AM (GMT 0)
Hello, I'm new to the forum thing so bear w/ me. This is the third one I have done so far. I was diagnosed w/ Fibro/chronic fatigue in 2003 after my second child. My first child five years earlier was almost lost as a result of umbilical cord tearing away from womb. So emergency C-section. In 2003 had another emergency C-section as a result of contracting a virus vaulting me into a hemolytic crisis(how I was then diagnosed w/Fibro/chronic fatigue).
Marrie, I finally went to a gyn as a result of chronic pelvic pain that I didn't think was really normal but have alot of other things going on kinda the least of my worries. He thinks I could have endometriosis but not sure until he looks around w/scope. I was diagnosed w/ peri-menopause last year. He says I could go on low dose birth control but don't want to chance it as I suffer from blood clotting disorder(after 1st c-section ended up w/ pulmonary embolism). I plan to do an endoscopy, just matter of timing(hubby's work,ect). Because the virus went into bone marrow, have low white counts so wouldn't be surprised if I have it elsewhere as I have chronic infections. All for now. Feedback would be great. Thanks. Kota
Posted 10/17/2007 3:45 AM (GMT 0)
Kota first of all welcome.  If I were you I would definately be pushing for a hysterectomy.  Especially since you alredy have two children.  It ws the best thing I have ever done.  It doesn't make you any less of a woman.  Just makes life less complicated.  Hugs
Posted 10/17/2007 4:14 PM (GMT 0)
Thanks Marrie, I actually would like to have one but keep ovaries...when I had gallbladder,spleen and appendicts out, lost 20lbs:) With my Fibro/chronic fatigue, I am irratable enuff. The only bad thing I also cannot take hormone replacement therapy as a result of blood clotting. I have two good weeks a month as a result of bloating,moodiness,ect. Uff'da:) PS Did u have any menopausal symptoms or no?
Posted 10/17/2007 4:36 PM (GMT 0)
I kept one ovary and no menapause syptoms. Only had menapause symptoms when I was on the Drug lupron that put into menapuse prior to surgery.
Posted 10/18/2007 5:35 PM (GMT 0)

Metallichic may I ask how your fibro is after your hysterectomy? My gyn has been talking about doing one for a while now, and recently is saying it a little more seriously thinking it's adenomyosis. For me the flow is heavier then it was last year, but not super bad. But the pain is bad. I'm prescribed vicodin for it, but it doesn't help it enough. I'm on the new continuous BCpill but feel worse from it. I'm going to see my GP today and my pain management dr tomorrow about what my gyn said.

But my bigger fear is it making the fibro worse. Being on the pill my fibro pain is better, not 100% but I'd say 80%! But it's making everything else worse. But if the hormones are making the fibro worse will they need to take the ovaries too? I just don't know what to do. Part of me wants to rip the darn thing out myself! And part of me worries about long term side effects. But do you only hear about those because no one goes around telling the world how wonderful they now feel, only how bad they feel?

Posted 11/6/2007 10:42 AM (GMT 0)
Hi everyone,

I feel the need to gripe about my illness. I am only 23 and was diagnosed with stage 4 endometriosis at 21. I have been newly diagnosed with adenomyosis as well after having a transvaginal ultrasound. An unprecedented age to get something like this. Both my endo and adenomyosis is diffuse (not pockets of adenomyomas or nodules of endo but rather just small bits EVERYWHERE). At this point in time my worry is about my breakthrough bleeding as I have had very little success finding a pill that I do not bleed over the top of. I cannot have periods as obviously, it is bad for the illness. Does anyone know of any pill that they have had success with?

I feel better knowing there are others around with this awful condition.

Leea.
Posted 11/11/2007 11:53 PM (GMT 0)
Hi Leea!

So sorry you're facing this, but believe me, you'd rather have that diagnosis than the time-honored response to young women with endo: "it's all in your head." I, too, was stage 4/5 at 20, but it took 2 years to get a diagnosis and another year to find a surgeon who wouldn't say "complete hysterectomy."

Gripe AWAY! you deserve to gripe. you're in godawful pain and it sucks! I truly am sorry for you. I can't help on the pill question, i broke through everything I was given, including straight-up testosterone (I could not believe it, there I was taking man-pills and still bleeding).

have you considered surgery? it gives your body a chance and then the pills are infinately more effective. but with your body consumed by the disease you're fighting a losing battle and suffering greatly while you do it.

sure this didn't help, but hope it encourages.

camille
Posted 12/6/2007 3:20 AM (GMT 0)

Hi there! I finally had my hysterectomy done on 26/10/2007. I took merely a week to recover from the laporascopy surgery. It was a very simple surgery and I maintained half of my ovaries. I felt extremely relieved now. Since then, I do not have period, I do not have to do any more pap smear! I am much more happier now.

Thank you all for your support and sharing which had actually helped me to make such decision. May God bless you all!

Andrea

Posted 12/6/2007 3:35 AM (GMT 0)
Still trying to figure outta time to set up a time(someone to watch kidz, ect) while I do this stuff. Guess it will have to wait to after Christmas...Uff'da. Huggerz to all. Peace out! Kota eyes
Posted 12/12/2007 4:50 PM (GMT 0)
i too have endo. I would suggest finding a endo specialist in your area a few are
dr albee and sinervo in atlanta ga
dr perry in birmingham alabama
dr cook in california
dr redwine in bend oregon
dr koh in wisconsin
there are many of them! they actually excise the endo not burn it off with laser. even if you have a hyst you can still have issues if the endo has grown anywhere besides your female organs. it can attach and grow on the intestines, the diaphragm, the appendix, etc. burning off the endo does not get deep enough to rid your body of it. so it does sometimes grow back. i would consider going to a specialist, alot of women swear by them that they have been pain free and endo free for many years after surgery.
Posted 12/12/2007 5:37 PM (GMT 0)
Did any of u have bladder problems assoc. w/endo...been having bladder probs for quite awhile and not sure if it is from my meds or something different. Take care. Kota :-)
Posted 12/13/2007 1:48 PM (GMT 0)
I am sorry to say this but if you have that much trouble with Endometri  you should seriously think about a Hyster. I am shocked that the Dr. hasnt said anything . Its not going to get better.

Posted 4/1/2008 9:16 AM (GMT 0)
I'm just diagnosed with Endometriosis. Anyone can recommend a good surgeon in Malaysia specialize in this area?
✚ New Topic ✚ Reply
12