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Topic: Endometriosis/UPDATE on 11/09

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Subject: Endometriosis/UPDATE on 11/09
Date Posted: 12/7/2007 10:40 PM ET
Member Since: 6/1/2006
Posts: 5,069
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Anyone else have problems with endometriosis? What have you done about it?

I had an ultrasound two weeks ago and it showed a lot of scarring, hence the severe cramps and heavy flow I've been having for the past 7-8 months. (I'm almost 44 BTW)

I had a follow-up with my doctor today and he wants me to chart my pain and flow for the next 6 months and then have another ultrasound to see if there are any changes. So more or less I have to suffer until then. I'm talking about the first 2-3 days of my period where I am doubled over in pain a good part of the day and pretty much out of commission. Then I still have several more days after that of heavy flow and discomfort. 

My doctor said it's going to be up to me what I decide to do next year. Hysterectomy, scar tissue removal, let it be and live with it a while longer and hope things change?

Oh the joy of being a woman!

UPDATE

I don't have endo. What my doctor refers to as endo isn't what I have.

Anyway, I went to a gyno specialist 2 weeks ago in Green Bay, had alot of tests and the only thing he could find is that I have a very thick endometrial lining which is a reason for the heavy, almost constant bleeding I've been dealing with over the last year.

No fibroids, no polyps, which is a relief but the heavy bleeding and severe cramps have no cause that can be found. Except that I'm pre-menopausal and this sometimes happens without an obvious cause. Lucky me!

So 2 weeks from today I'm having surgery to destroy the endometrial lining of my uterus. It's called endometrial ablation. The doctor will burn the lining of my uterus. This surgery only takes about 5 minutes and will be done on an out patient basis. I'll get to go home the same day.There is a 90% chance that I will never bleed again, and that includes having periods. The cramping though will probably not go away. But I can deal with that as long as I'm not bleeding all of the time.

It sure paid to go out of town and seek out a specialist. It really sucks to live in an area where the doctors and hospital are not up on current procedures. I have to travel 200 miles round trip to see this doctor but it's certainly worth it.

I'm looking forward to not having to buy "equipment" (pads and tampons) anymore.

 UPDATE 11/09

Had my surgery Friday morning and I'm feeling good today. Everything went well. In fact, I was bleeding heavily the day of my surgery and when it was over there was no more bleeding. A little spotting the first day, but no bleeding since. Looks like the surgery was a success!

 



Last Edited on: 11/9/08 4:16 PM ET - Total times edited: 2
Date Posted: 12/8/2007 6:49 AM ET
Member Since: 9/30/2006
Posts: 6,929
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Bunly ~

"Has anyone else had problems with endometriosis?"

I am the queen of endometriosis!

I find it interesting that your doctor made that diagnosis after looking at an ultrasound.  I have been under the impression since I was diagnosed with this that the only way you can truly diagnose endometriosis is by doing a laparoscopy.  If that is what he suspects really is the problem, it might be worth your while to have him do that and while he is there, he can laser off the en. that is there.  If the scar tissue is caused by adhesions (have you had any abdominal surgery in the past?  appendectomy or something like that?) then he can release those as well.  That may at least make you more comfortable while you go through this 6 month charting exercise. 

Man, I still don't see how he could see that with an ultrasound.  I had an ultrasound at one point, I was full of adhesions, but it didn't show up on my ultrasound.  Is this doctor your gynecologist?  If not, get a referral to one ASAP.  You should hear a far  different story from them.  I really just don't agree with the course your doctor is suggesting, as a nurse and as a patient.  It does not make sense to me to have you suffer through 6 more months, charting something that you know is a problem anyway.  Why wait for more scar tissue to develop? 

Although I can tell you everything you want to know about endometriosis but was afraid to ask, my advice to you is to go to a gynocologist, and if this doctor is a gynecologist, ask for a second opinion.  I don't think you are being served well with the current doc's plan.

Please know that if you have any questions or want to just chat about it at any time, just post here or send me a PM.  I'm really sorry you are going through this!  I really do 'feel your pain'. 

hugs



Last Edited on: 12/8/07 6:50 AM ET - Total times edited: 1
J
Date Posted: 2/10/2008 12:50 AM ET
Member Since: 3/23/2007
Posts: 2,910
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The doctor diagnosed me with endometriosis after laproscopic surgery (painless recovery). He said I have one of the worst cases of endo he's ever seen, but I'm lucky to say that i usually only have 1 day a month of stomach cramping and I've noticed the older I get the shorter my periods are. I used to have a very heavy flow for 7 days. Now its 1-3 heavy days then a couple of light days then I'm done.

Subject: RE: Endometriosis!
Date Posted: 2/13/2008 1:42 AM ET
Member Since: 10/2/2007
Posts: 59
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First and foremost, you should NEVER be in so much pain that the doctor won't help. You have chronic pelvic pain and he or she needs to address the pain issue and prescribe you something to help with the severe cramping. I know all to well the pain and suffering of Endometriosis. Usually the only help is the dreaded Hysterectomy. And I've had it done and you will be happy once you know longer have to deal with the monthly period pain. But for now, make sure your doctor is aware that the over the counter pain meds like Motrin don't work. And he may try to give you massive doses of Motrin to relieve the pain, but that is not good for you. Try to something like Norco or Oxycontin, that is low or has no Tyenol. Also try a hot water bottle. Endometriosis is a very progressive disease that is why it usually comes down to a hysterectomy for the treatment. The other treatments like birth control or danzol don't work!

Date Posted: 2/23/2008 11:46 AM ET
Member Since: 1/31/2008
Posts: 2
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Oh girl I'm sorry!!  Check out the book "What your Doctor May Not Tell You About Premenopause" - seriously find a doc that will not do a hysterectomy.  My periods are almost blissful now since starting on a natrual progesterone cream (I've been using it for a year+)

I hope you are able to find relief!

Rachael

Date Posted: 3/27/2008 11:01 AM ET
Member Since: 12/29/2005
Posts: 2,040
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I find it hard to believe he would want to chart your pain. I agree it is a MUST to see a GYN. I was diagnosed in 1987 at the age of 21 after suffering horrid cramps since I was 13. I knew what i had in my own heart, but had to wait until there was a reason for a Dr to think that. A cyst on the ovary did that and the ovary was removed. I had 2 children a few years later (at 25) and then no problems until I was in my early 30s. Then it was clots & heavy periods. I went to the Dr every couple of months and they kept saying it was nothing. Then I went to a new Dr who looked at my charts and said I had Adenomyosis.(they had the info just wouldn't diagnose me before) That is where the blood grows into the uterus enlarging it (basically). I had a hystrectomy and it has been the greatest thing. I did have them leave the cervix and my ovary after researching hysterectomy info.

Date Posted: 4/10/2008 4:14 AM ET
Member Since: 4/10/2008
Posts: 1
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Joy- definitely agree with your advice.  You are right on the mark. 

Here's my story:  got symptoms in my mid-20's and fortunetly had a wonderful GYN.  Anyway, the end result was he went in with abdominal surgery.  He wanted to do what he could to keep things intact so I could have kids.

Well, he opens me up and here's one ovarian tube so twisted up because it ended in a ball of blood that was the size of a tennis ball!  The other was twisted too but  not as bad.   My  dr  knew  me  as  a  really open person, so out he goes into the hall calling everyone to 'come see this', it was so unusual.  Now comes the good part, he had just been to Boston Women's and heard a lecture there about this protocol.......so, he untwists the not-so-bad tube and cleans that up.  The other he tries to untwist and gets most of it but has to put in a plastic tube on the end.  Then he closes me up.  The follow up was to be on birth control for a year without having a period.  Every month I had to go in so he could blow my tubes with gas to keep them open.  At the end of a year, he gave me a 50-50 chance of having kids.  It was probably 5 or 6 years before I got married------and had 4 kids!!   I will always be grateful to him for taking the time to do it the hard way. 

I know this isn't a typical case but nothing I get is typical, it seems.  I'm always the odd guy out.  Used to it now--I'm 60 with 5 grandchildren.

Denise,  hie thee to a better doctor.  Maybe find a woman ob/gyn, at least they can empathize.  Don't let this GUY let you suffer.  Whether or not we have endometriosis, women can all understand immediately what you are talking about.

Joy

 

 

 

 

Date Posted: 5/3/2008 6:58 PM ET
Member Since: 3/28/2006
Posts: 935
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I was diagnosed with Endo just over 2 years ago, when I was 20.  It has been a battle since then, including  a laparoscopic surgery, then 6 months of  Lupron.  I’ve seen a specialist but am at a stand still with my doctors at this point.  The only thing that I have now are pain meds while my OB/GYN is researching an investigational medication.

Here are a few things that you should know:

  • The only way to diagnose Endo is thru laparoscopy.  An ultrasound just won’t pick it up. 
  • Unfortunately there is no cure for Endo.  Just know that Hysterectomy is not a cure, and then Endo can live in many parts of your body, not just around your reproductive organs.  Even after a Hysterectomy many women still have pain.

The best advice I can give you is to educate yourself.  Read anything that you can get your hands on.  If you feel that you need a second opinion get one!  There are centers in some states that specialize in treating just endometriosis.

ETA: If you have any more questions feel free to PM me.  I'll help anyone with this disease any way that I can.

 



Last Edited on: 5/3/08 7:00 PM ET - Total times edited: 1
Date Posted: 5/16/2008 8:26 AM ET
Member Since: 9/30/2006
Posts: 6,929
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Lots of good advice, Denise.  I echo Kathryns' offer of being available to anyone with any questions.  I am wondering how you are doing now, if there are any changes, have you had any surgery done, seen a GYN doctor. I'm very interested in knowing where you are at this point.  You have alot of ladies giving their support!

hugs

 

Date Posted: 6/12/2008 4:54 PM ET
Member Since: 10/6/2005
Posts: 10,718
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I was diagnosed with endo back in 2000 after a laparoscopy where my GYN removed significant tissue. My son was born 4 years later after 2 years of fertility treatments. Now my GYN wants me to have a hysterectomy b/c my problems are returning, but my cardiologist refuses to sign off on it b/c he says it's not safe for me to be under general anesthesia for that long plus women with heart disease tend to have even more heart problems when a hysterectomy messes up their female hormones. I'm not sure what I'm going to end up doing at this point - I know I'm sick of all the pain and digestive problems that hit every month!

Date Posted: 6/18/2008 11:19 AM ET
Member Since: 1/6/2008
Posts: 3,685
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Last Edited on: 2/2/15 4:52 AM ET - Total times edited: 1
Date Posted: 6/22/2008 8:27 PM ET
Member Since: 9/30/2006
Posts: 6,929
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Denise~

How are you  doing now?  Keep us up to date, we are concerned about you.  Please everyone else fill us in from time to time.  We all see different doctors, maybe one of them will have found something that really works.

 

Date Posted: 6/22/2008 9:37 PM ET
Member Since: 3/28/2006
Posts: 935
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Here it the link to a great support board.

We're always talking about treaments over there.  I hope that you ladys will find it helpful too.

http://dailystrength.org/c/Endometriosis/support-group

Date Posted: 9/20/2008 11:08 PM ET
Member Since: 3/28/2006
Posts: 935
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I found somw blinkies for us Endo Queens!  Feel free to share them with me.

I'm hoping that I might get a few questions and be able to spread the word about endo.

Date Posted: 10/24/2008 5:28 PM ET
Member Since: 6/1/2006
Posts: 5,069
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*****bump*****

Date Posted: 10/24/2008 5:53 PM ET
Member Since: 7/14/2007
Posts: 8,942
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So 2 weeks from today I'm having surgery to destroy the endometrial lining of my uterus. It's called endometrial ablation. The doctor will burn the lining of my uterus. This surgery only takes about 5 minutes and will be done on an out patient basis. I'll get to go home the same day.There is a 90% chance that I will never bleed again, and that includes having periods. The cramping though will probably not go away. But I can deal with that as long as I'm not bleeding all of the time.

It sure paid to go out of town and seek out a specialist. It really sucks to live in an area where the doctors and hospital are not up on current procedures. I have to travel 200 miles round trip to see this doctor but it's certainly worth it.

It sounds like you've found a great solution, but Yikes!  200 miles!  Someone's driving you, right?  Or you're staying over in a hotel?

Date Posted: 10/24/2008 7:29 PM ET
Member Since: 6/1/2006
Posts: 5,069
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DH is taking me down, driving me home and taking care of me over the weekend.

Only 2 days off my feet and I should be good as new.

 

 

Date Posted: 10/24/2008 10:20 PM ET
Member Since: 3/28/2006
Posts: 935
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I'm so happy that you don't have endo!  Take care of yourself and good luck with you procedure.

Date Posted: 10/25/2008 2:02 PM ET
Member Since: 7/14/2007
Posts: 8,942
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DH is taking me down, driving me home and taking care of me over the weekend.

Only 2 days off my feet and I should be good as new.

That's great!  From what you posted before it sounded almost like you were going to drive yourself there, have the procedure and drive home!   Amazing that after all that trouble, it just takes one long weekend to be done with it forever!