View Full Version : Anyone have experience with adenomyosis or endometriosis??
12-11-2008, 11:50 PM
I've always had excessive bleeding with menstruation. Pain during intercourse became pretty intense in my 20's, and I had a myomectomy in 12/00 to see what the problem was. Results (confirmed by tissue testing) showed that I have adenomyosis. Endometriosis inside of the uterus. Thankfully, the surgeons scraped the uterus clear, but encouraged me to become pregnant within the year (before it came back - 33% chance). My husband and I did as recommended. About a year after my first child, the pain started coming back. I was able to have another child 2 years after my first. It's now been 4 years, since my 2nd child was born, and pain has been back at top level for a good year.
I've also began having extremely long periods about 1 1/2 years ago. One lasted for 5 weeks; a couple weeks off, then another month of bleeding! My husband and I planned on total hysterectomy, to finally get rid of my excessive pain & bleeding, but that was changed (at last minute) to Depo shots for 3 months. Since then, my husband and I separated & my world fell apart. At first, the last thing I wanted to pay any attention to was my adeno, so I just dealt with it. The trouble is that the last couple of months have been more painful. My bleeding isn't as excessive as it used to be (knock on wood). However, I've been menstruating for almost 3 weeks now. The last 2 weeks being lighter, dark blood expelled. TMI, probably, but whenever I have a bowel movement, the blood expelled is then in clumps & is bright red.
Does this sound familiar to any of you, or am I a freak case??
12-12-2008, 05:12 AM
It does sound familiar, but not for myself.
I'm sorry but my memories of gynaecology are a little blurred now but I did work for a Gynaeacology Specialist many years ago, and we did have ladies coming in with similar problems to your own.
With the recent separation from your hsband, I'd really not suggest a hysterectomy at this stage, even though it probably sounds like the answer to all your problems. Maybe a curette would ease your symptoms temporarily.
I think that a hysterectomy is probably your only long time cure, but if you're still young, hopefully you can hold on to it for a little bit longer. I had one for gynae problems and it was after I'd divorced my first husband, then 5 years later I remarried. My new hubby wanted children, but by then I couldn't have them. I'd have liked to, so please don't make any rash decisions just yet.
Have you been back to see your Ob/Gyn? If not, then an appointment with them is probably the first step to see what else can be done for you.
I daresay you will need to get your blood count checked too, because if you've been bleeding for 3 weeks, then I imagine you're probably anaemic as well.
I'm so sorry that you've had to go through all this, and I do hope it eases soon. I also hope that your Gynae has answers that will give you releif without having to have that hysterectomy.
Please let us know how you get on. :hug:
12-15-2008, 01:32 PM
Thank you for listening, koala77.
I have been warned extensively what a major surgery this is & that I require support throughout. Due to the myomectomy, I required planned c-sections in my pregancies. I chose to have my tubes tied as well last time. I certainly don't regret that decicion. I am 38 years-old now, and never planned on waiting this long to have a family anyway ;) As you can see, I am anxious to end this 15+ year battle.
Curious why the hysterectomy would be more invasive and painful than a c-section? The doctor would be taking my uterus and cervix, but plans to leave the ovaries.
12-15-2008, 03:01 PM
I have had endometriosis in the past and had a lap for it but it was not severe.
Is there anyway they can do a laproscopic hysterectomy?
12-15-2008, 03:50 PM
I had severe adenomyosis... which began after my third child.
back then, I didn't know it had a name, just that it hurt.
I had never had heavy periods before, and never any cramps, so it was a big surprise, but I had no medical insurance, and was working fulltime, with no family nearby to help, and 3 kids to support, so I just *dealt* with it.
I would spend 5 or 6 days per month in clutching pain, with very heavy bleeding,
finally, it got so bad that at age 35 I found a sympathetic doctor, who agreed to accept "temporary Medicaid" and did a hysterectomy, leaving the ovaries and tubes in place.
my step-daughter is now going through this, and she's having an "ablation" done in February.
I wish you luck whatever you decide, but make sure you think it over carefully, Koala's right, and also, get yourself an IRON supplement...
Floradix liquid iron supplement is what I used, to get rid of the anemia, caused by the frequent heavy bleeding:
12-16-2008, 02:12 AM
Is there anyway they can do a laproscopic hysterectomy?
No, I've been told that my hysterectomy will be done through the abdomen. Many women are able to have it done vaginally - that isn't an option for me, some medical reason..but I don't know why. I have heard that having it done vaginally is much easier to recover from. I personally know a few who've had it done for their endometriosis.
12-16-2008, 02:43 AM
Thank you very much for the links provided and understanding. :)
12-19-2008, 05:20 PM
I had Adenomyosis and had an abdominal hysterectomy. The name of the type of hysterectomy that I had was a Laparoscopic Supra Cervical Hysterectomy or LSH for short. It was done using the Davinci Robot. I had four small incisions into my abdomen and the physical recovery wasn't that bad. The doctor removed my uterus and he left my cervix and ovaries. It is pretty common to leave the ovaries if the patient is young and the ovaries are in good shape. The cervix is sometimes removed and sometimes left in. Mine was left in and I regret it. I have mini periods every month because my cervix is still responding to my hormonal fluctuations. WHAT FUN!!!
If you have any more questions, feel free to pm me.
12-20-2008, 07:20 AM
I had endometriosis for YEARS! I think it really began when in high school. But through the years I dealt with it and later had it lasered out and had my daughter in 1984. However, the endo came back time time and again. I think I averaged about 2 to 3 years before I had to have it lasered again. Anyway, I had a total hysterectomy in 2000. Like Evonne I had the LSH but throw the "V" in there because it was done vaginally. And EVERYTHING was taken. My RE did not leave my ovaries because estrogen is what feeds endo. Besides, one of them was bad if I remember correctly. For anyone WITHOUT endo, I would say do your best to KEEP your ovaries. In any case, my RE almost couldn't get the job done vaginally because as she stated, I had only had one child. But she managed and recovery was not all that bad. The hardest part were the years that followed and getting HRT adjusted...long story. However, last year I was able to stop wearing the patch since my requirements had changed over the years and now just use the Premarin vaginal cream.
I know you are anxious to be rid of the problem but PLEASE think it over and let your doctor advise.
12-20-2008, 05:09 PM
Thank you for your response. Of course, I will follow the doctors directions. Plan is to keep the ovaries & take both uterus and cervix when I do have my surgery. I do look forward the end of the adeno though!
03-18-2009, 09:52 AM
Shezbut, just wondering if you have had surgery or not? Your story sounds very similiar to mine. I spent many years in such abdominal pain and bleeding like a river for weeks at a time. I was also told to have kids as soon as possible (well that was in 1993) because a complete hysterectomy was in my future. My children are now 11 and 13.
In 2002 my insurance denied the hysterectomy, so I opted for a uterine ablation (where they completely burn out the lining). Theoretically you can still get preganant but the chances are greatly decreased to start with, I saw you said you had your tubes tied allready. I started with no period at all, but 7 years later am now up to a few days of very light flow. The body does repair the cells but it is very slow, when I had it done there wasnt much long term info, who knows I may need it done again in the future.
03-19-2009, 01:17 AM
I was set up for total hysterectomy 12/07, but my marriage went caput :( recently. That basically put a hold on it, and I was given hormonal injections for 3 months. I was supposed to get a long-lasting 3-month shot a year or so ago, but I was so depressed about the separation/divorce, I gave up. I figured, who cares?? :(:confused:
The injections helped while they lasted :o - but the pain is back. My period now lasts 2 weeks. 2 weeks off, and then 2 weeks back on. Just like clockwork. Probably more info than you wanted, but that's what's happening :D.
Doctors now shy away from doing a hysterectomy on me because I have so much chaos going on within my life :eek:! I just have to deal with it and hope to God that something in my life improves soon!
I wish you much better luck honey! Take care!
07-27-2011, 06:46 PM
My OB/GYN told me that i may have adenomyosis. I have always had problems with heavy bleeding. Always regular though. Then had the Mirena put in. And it was bad so after 7months i had it taken out. And thats when my problems started. Periods no longer regular. I have been spotting and bleeding for 3 weeks straight. terrible pain and cramping bleeding is not very heavy. We are trying to conceive and it has not happened. Any Ideas?
04-03-2013, 04:18 PM
Shez i have same problem with bleeding also have endomtroisis the bleeding is very heavy and cramping is awful i am bleeding like this for weeks non stop sometimes.
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