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problems after ablation (help) problems after ablation (help)

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Unread 04-12-2008, 10:29 AM
problems after ablation (help)

I had an ablation in November 2006. The surgery and recovery was easy. Then the problems started. Severe pain in pelvis hips and back. ER visits ,ct scans fluid in fallopian tubes,infarcted fibroid,scaring and more. Anyone have the same story and did you end up having a hysterectomy or find another solution? Any help and info would be great!!!!!
lovershorses in SC
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Unread 04-12-2008, 04:47 PM
problems after ablation (help)

I had ablation in June 07 and have had very similar problems to yours.
My ablation wasn't what I would call successful as my bleeding was nearly as bad post ablation. Now it has settled somewhat so I guess I have 'normal' periods now, not as many accidents.
The most odd symptom after the ablation was in Sept. My period started and within hours I was in the ER thinking I had blown an ovary or something. They initially thought kidney stones because of the severity of the pain but everything came back normal. The pain feels as though someone has their hand inside me and is trying to rip my ovary out. I'm fairly sure it's in that area as I've had lots of ovarian cysts over the years and when they rupture, you become very aware of where your ovary is. Plus I'm a maternity nurse so I know a little bit about physiology.
The pain continued off and on until the end of that period and then the next month it returned. It is severe and for me always is on the lower left side. It causes me to double over and I can hardly walk. It is worse than labor and I've had five children so I know pain (no pain meds for labor) and I can handle pain but this is extreme. I went in for a diagnostic lap. in Nov. and everything was 'wonderful' in my doctors words. I do have a small fibroid and I often have cysts on my ovaries but I've had those for years with no problems other than extreme bleeding.
The pain is there monthly which lands me in the ER often. Now I have a prescription for very strong narcotics which I hate taking but I only need them for 8 days a month.
I am having a hysterectomy on May 5th as a last resort.
I have researched lots and lots on this topic and I've found two possible things. 1) adenomyosis 2) post ablation tubal sterilization syndrome.
I believe mine is the second but my surgeon's interns suspect it is the first. Either way I don't care, I just want it fixed.
There is lots of info. on the first one but very little on the second and in order for it to possibly be the second you would have had to have had a tubal ligation.

I really hope they figure out what yours is and I can report on how my symptoms are post surgery but it will be at least 6 weeks or so before I know.
I'm grasping at straws here and I know it but I figure if the uterus and left ovary are gone, the chances of that pain returning are slim so I'm going for it.
I should add that my OBGYN is very good. She wanted to try an IUD but I had very severe problems in the past with those so I said no. Plus I'm tired of trying things to see if they work. She said it would take 3-6 months to see if the IUD would work. I can't wait that long. I can't be on these strong meds that long and I have a daughter getting married in a month and another daughter and son in law expecting a week after that. I can't put my life on hold.
Good luck and I'll be praying for you
Unread 04-12-2008, 05:23 PM
problems after ablation (help)

Thanks for the information Sande5. Sounds like we both have had a long and painful journey since our ablations.I have been told I was in the 10% it did not work on. I just wish I would have known what happens in that 10%. I am sorry you have had this also but i think having the hysterectomy is the only thing left that will get rid of the pain. I am on BC pills(yaz) to see if they will help. I am not very confident they will, but i will try.I also gained 20lbs after the ablation. Did you have weight gain also? I hope your hysterectomy is a breeze this May. That will be about the time I have mine too. Just don't want to do it but have too i guess. Hope you are feeling great shortly and all the wedding plans go will be in my prayers also.

loveshorses in sc
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Unread 04-12-2008, 05:38 PM
problems after ablation (help)

I did gain weight after my ablation. I know my surgeon thought I was weird when I said that but part of it was the luperon shot. It did horrible things to me and I had migraines galore.
I put on 24 lbs and I'm a big girl to begin with. I had lost 30 lbs the year before so I was a bit miffed. I'm trying to get it off again before the hyst but not having much luck. I walk 4 miles a day and am eating very healthy but it's really slow going. Not sure what that's about.
You won't find much information on this stuff but I did manage to find some. I actually printed it off from things on line and took it in to my doctor. I also had her do some research on it as well and she agrees it's likely it's one of the two but still not sure why. What bothered me was she said she's never heard of these problems post ablation but she immediately took responsibility and wanted to do whatever she could to help so that was the upside. I totally didn't blame her as I have a freaky body and weird things happen to me all the time and I have some pretty rare things like a bleeding disorder etc.
Anyway, I'll like to tell you that there are others out there with these symptoms. In fact every day I get up and look some more and every day I find another person who has this happening so I know it's not just me although we are made to feel that way sometimes. I do know that one of the journals mentioned a 3% chance of this stuff post ablation so I know there are more out there.
Keep smilin' we'll get through it all
sande5 in Canada
Unread 04-12-2008, 06:30 PM
problems after ablation (help)

I had just lost 20 lbs also. After the ablation the first month or two it was not bad. Then the weight started to pile on. I ate good and walked also ,for 30 to 45 min a day. But that was on the days I was not in extreme pain.When I went to the er we thought it was kidney stones also!Don't ya just love it. My doctor told me that the 6cm fibroid infarcted and that was causing the pain. It is gone and the pain is still there. Now its the scarring and pockets.Also have had 2 UTI since then. I have only had 2 in my lifetime and I am 46. I had a long talk with my obgyn. He is a good friend of mine and I just love him. I have 3 boys and he delivered the 2nd and 3rd . I just wish that doctors would be more informative to their patients about the complications of ablation. It is not that great. My bleeding is better but the pain is so much worse that I could have imagined. Pain in bodily functions, weight gain,severe ab and back pain and not to mention sex drive. Hello!!! I guess I would like for more info to be given to women getting this surgery.I would go back to flooding and 2 days of discomfort then what I have gone through. I also found this website like you and cried when I found out other ladies had gone through this also. I know what you have been felt.I hope this surgery in May will help heal your body and soul.

Take care,
loveshorses in sc
Unread 04-12-2008, 07:53 PM
problems after ablation (help)

I actually had two ablations done. The first was in 2002, which helped immensely. In the beginning i did not get a period, but within a matter of 3-4 months they came back. Much, much lighter than before. Fast forward to about 1 1/2 -2 yrs ago I noticed my periods were much heavier. Lots of clots and frequent pad changes. I did notice some menstrual pain that I don't remember experiencing, but just ignored it and went on. Then last august I decided to try another ablation. Almost right away, I bled constantly. In the last 3 months, I had a total of 10 days WITHOUT a period. I have an appointment on Monday with my gyn to discuss a hysterectomy. His plan at this point is to leave my ovaries, but to remove my uterus and cervix. And depending on my fibroids, vaginal vs abdominal surgery. While I don't have an issue with no more periods and I've been "done" having children (tubal in 1988), my biggest concerns with the surgery is 1. recovery time 2. sex. One more thing to add is that I'm getting married in September and I would actually like to be able to have an active sex life with my new husband. He's been very patient and understanding so far, but we are only in our early 40's (I'm 43) and I'm not ready to give up our sex life. Anybody have problems or issues in that department? Believe it or not, just today I had a very frank conversation with my mom (another hystersister) about sex after a hysterectomy. Thanks in advance.
Unread 04-12-2008, 08:19 PM
problems after ablation (help)

One was enough for me. The bleeding did get better but the pain is terrible. I would rather have the bleeding than the severe pain any day. I think that dealing with the pain and not feeling good has had an affect on the old sex drive. Just knowing you could end up in the er due to pain is enough to dampen almost anything. I have talked with other ladies who have had to have hyster surgery and they have said it was the best thing they have done. If you are feelin good that should help with other things!!! I am going to have surgery in may and am looking forward to feelin like my old self. The info I have gathered is that if at least one ovary is left that will help with hormones. Recovery from vaginal is easier. I hope all works out for you. Hope you have a good OBgyn. Do not give up. Congrats on your upcoming wedding. You will be in my prayers.
Unread 04-12-2008, 08:51 PM
problems after ablation (help)

I was wondering what do you think causes the weight gain? are you very hungry? or are you eating the same as before..i cant imagine gaining weight without you mean a larger belly? also, i have the headach for almost 2 weeks now, not horrible, just dull and constant..what in the lupron shot causes the headache? i must sound so ignorant..i know the side effects just not sure why they happen..its been almost 2 weeks since my 1st shot and other than the headache and some tiredness im not feeling anything else..also, some minor cramping ,at times i feel like im going to get my that a side effect?
Unread 04-12-2008, 10:27 PM
problems after ablation (help)

I'm not sure what causes the headaches. I was told it was not normal to have headaches but I had migraines almost constantly. I am a chronic migraine sufferer except when pregnant. I thought being put into menopause would be similar but my dr. said not so. I am back to regular monthly migraines since the drug is out of my system but I am concerned about real menopause causing a return of the migraines. I think it's simply the hormones that caused my migraines.
I do feel as though my abdomen is swollen all the time. I also have begun to have cramps like labor pains just prior to my period and this is only since the ablation. My gyn. thought maybe it was due to the ablation and something called cervical stenosis so she jigged things up a bit during my last lap but it hasn't helped.
I'm really not sorry I had the ablation because at least I can leave my house now without taking extra clothes with me everywhere but I must say I too would take the heavy bleeding over the severe pain.

As far as the weight gain goes it is most likely that because of the pain and the fear of more pain I didn't exercise as often. I have fibromyalgia and I use exercise instead of meds to keep it under control. Even though I am obese I love to exercise and so I think not being as active didn't help. Plus my body seems to really like one particular weight which is far too high for my 5'5 frame but I eat very well. Mostly chicken breasts and lots of veges and fruit and very little fatty foods. I don't like red meats but occasionally eat them. I am not a bread person and I can't stand sweets or chocolate. I do suffer from severe irritable bowel and I think my body just takes as much as it can get from the food I eat and keeps me heavy.
Even these past two weeks I walk on average of 4 miles a day and part of that is jogging. I eat 1200- 1500 cals a day and with those two things alone I should loose about 2-3 lbs a week and yet I only lost 1 lb. Very weird. I don't think I've ever had such a hard time loosing weight but I can't say for sure if it is because of the ablation and meds. but it does seem weird.
Unread 04-13-2008, 06:40 AM
problems after ablation (help)

Just very short. I had an ablation/tubal in 04. It did stop the bleeding, but last summer I started having very severe menstrual cramping (hydrocodone daily for two months). Started in spring monthly, then moved to daily. Everybody said there was "nothing wrong"!! Ughhh...yes there was! Put on BC pills -- did nothing. Through research, I diagnosed myself with adenomyosis (something local docs NEVER mentionede). Fast forward....LSH/BSO in September with tremendous surgeon (YES adenomysosis!). Back on my feet in a week!! Sex is better than ever!! No headaches, grumpiness, monthly emotional roller coasters, etc. Life is good!!!
Best of luck

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