Ligation + Ablation ??

Hello, everyone.

I am new here and I am hoping other users can provide support and encouragement.

I was slated for a hysterectomy in the fall of 2003, but decided against it at the very last possible moment (two days before surgery!).

The things that prompted my decision first to have it and now to seek alternative options are as follows: I have had painful cramping and heavy bleeding with my periods for a number of years. An ultrasound and an exploratory laparoscopy in 2003 were inconclusive; the only thing my ob/gyn can tell me is that I suffer from menorrhagia and dysmenorrhea. Her recommendation was to have me on low-dose birth control pills (Alesse) and to take them continuously (no 7 days off between packs).

Well, that worked like nobody's business until October of last year. Since July, 2006, I'd been spotting, which I'd initially dismissed as breakthrough bleeding and nothing out of the ordinary. The spotting got progressively heavier until October 16, I was doubled over in pain and passing such huge, bright red clots that I feared the worst.

My partner rushed me to the ER. The doctor there was very compassionate and gentle and performed a routine pelvic exam. I thought I would hit the roof. Despite his gentle touch, I was in so much pain. I'd lost a lot of blood. He ordered the routine blood test, pregnancy test, urine sample, blah blah blah...

No pregnancy. No miscarriage. Nothing out of the ordinary. Five hours in Emergency Gynaecology, and I was allowed to go home.

The ER doctor prescribed three days of Ovral to make me have one BIG period -- an effort to make me have one really heavy bleed to "flush out" whatever had built up in my uterus/endometrium. Following that, he told me he wanted me to go ten days without medication, and to then start on Cyclen.

From there, I made an appointment with my family doctor and again with my ob/gyn. I was referred for a pelvic ultrasound, and this time, an endovaginal ultrasound as well. Again, the reports came back inconclusive.

My ob/gyn had me remain on Cyclen continuously. That abated the breakthrough/bleeding, but now it's back again, and just as before, it's gotten progressively more. It started as little brown spots, but now it's bright red again. No clots, but still bleeding. I'm tired of having to wear a liner/tampon/pad all the time. Who ever heard of having a period every day of the month??!

I am so tired of playing the "hormone guessing game" in an effort to find the right pill.

<cynical>
Does anyone here see the carnival wheel with the spikes on it? Spin it and guess which pill we're on this month... Okay, maybe I'm a little cynical, but honestly, I'm really tired of this.
</cynical>

It should be noted that because of other underlying medical conditions, including migraines, I'm not a candidate for injectable contraceptives or for combination pills; my choices are quite limited.

While in the past, the breakthrough/bleeding didn't really cause me any physical discomfort until it became really heavy, this time, I'm experiencing back pain, cramps, and at times, a slight feeling of lightheadedness and nausea -- even with the "light" red bleeding.

I'm at my wit's end with this, and I would really like to see my quality of life improve. Not to mention that I look forward to wearing pretty underwear again. WITHOUT FEAR!!! You girls know what I'm talking about.

My ob/gyn and I have discussed IUD as well as endometrial ablation, namely Novasure. I have decided that I do NOT want an IUD.

I would like insight from other users who have undergone the Novasure or similar ablation procedures. What was your experience following the procedure? Did your symptoms cease? What was your pain level? Recovery time? How much did you have to rely on your partner for help? When were you able to resume intercourse/relations and normal activities?

I'm 37. I have not had children and my partner and I don't plan to have a family. I'm looking for a reduction of my symptoms: namely pain, cramping, and heavy bleeding. I'd like freedom from birth control, so I am also amenable to the idea of a combined ligation/ablation procedure.

Thank you for taking the time to read my story. I look forward to your insights and words of support and encouragement.

I'm blessed that my partner is very involved in the decision making and supportive of whatever I ultimately choose. God love him! (I sure do!)

I had a NovaSure Ablation along with a D&C in Oct. 2006 for menorhaggia and dymennorriah. While there they found polyups that had been causing the heavy bleeding and painful cramps like you described. I had no pain when I woke up and was home by early afternoon. Many women report being able to resume normal duties the next day. I had to wait 2 weeks before resumeing intercourse.

My experience went south the next day, but partly due to dr. carelessness. Not only did she leave me with a kidney infection and peritonitis from the hysterscopic fluid spilling over into my abdominal cavity, my dr. did not go back in with the hysterscope and double check that the ablation had cauterized all the living tissue. Therefore the living tissue was trapped, and with no way to bleed out, it bled back into my pelvis casuing acute endometriosis and a chronic inflammation. I switched dr. and he diagnosed the Post - Ablation Syndrome and endo. (I had had some before the ablation but had been asymptomatic for the most part).

I did stop bleeding after the Ablation, but I started to have contant pain. It finally got to a point where I was living off of pain killers. When they got the path. back from my TVH, they found that I had fibriods hiding inside the lining of my uterus, that previous ultrasounds, CAT scans and Laps. had not detected. The cauterization from the ablation had aggravated them, and they had started to swell and causes lots of pain. An ablation will take care of the bleeding, but most of the time it won't help with pain from endo, adno, or fibriods

Many women do have wonderful experiences with the ablation procedure. I'm glad that I did try it before I ended up wtih the hyst. It did stop my bleeding. I'd reccommend getting a second opinion to anyone who is considering any procedure. I wish I had done that for me in the beginning of all this. And I'd talk to your dr. and ask him to explain in detail how he will do the ablation if that is what you decide.

I wish you the best of luck in making your decision! You can always PM me too if you have other questions.

Take care, Jen

Hi, Jen.

Thank you for your reply. I am seeing my doctor this afternoon, and I have a lot of questions for her.

To sum up, she did a pelvic ultrasound and a laparoscopy in 2003. Neither showed an enlarged uterus, fibroids, or indications of endometriosis.

I had a pelvic, as well as an endovaginal ultrasound in October of last year following a really scary episode and again, the report was inconclusive. It wouldn't appear I have fibroids, endometriosis, prolapse, or cysts. I do know that adenomyosis can only be diagnosed once the uterus is removed.

So... we have no clue what the problem is. I'm not sure whether I want a hyst at this point; I was slated for one in 2003, but as I mentioned earlier, I chickened out.

What I can tell you though is that I'm looking for:

relief from back pain, abdominal pain, cramping
relief from headaches, both tension and migraine
freedom to enjoy lovemaking without having to worry about condoms
freedom from having to take birth control pills -- continuously or otherwise
an end to the bleeding, spotting, and breakthrough bleeds

Like I said, I doubt IUD is an option for me. It just doesn't appeal. Based on the solutions I'm looking for, it would seem ligation + ablation is my option at this point.

Thanks again, Jen, for your insight.

Hi rachelle_d,

I had a rollerball ablation. (First generation type, with great track record - but tedious to perform and is now being replaced by the simpler types) Anyway, mine didn't work because I had so many other things wrong(adenomyosis, endometriosis, fibroids and ovarian cysts) - but... the procedure was very well worth the try and I don't regret it at all. My periods were so bad that the ablation was nothing compared to what I was used to. Seriously. The only thing I needed my DH for was to drive me home from the hospital. By the time the kids were back from school that afternoon my cramps were only half of what I was typically used to and the next day I was fine. I don't remember when it was that we were allowed to resume relations, but I remember I had to go back in the office for another exam and also remember having a brownish/pink discharge for a few weeks.

My older sister and a couple neighbors have had successful ablations. My younger sister has the Mirena IUD and is doing great on it. I hadn't heard of it before she got it and questioned her use of an IUD until I learned more about this one. It's unique. She can't take systemic hormones because of severe migraines and the Mirena is something both her GYN and neurologist thought would be a good option for her. Because it delivers the hormone right to the uterus, it thins the lining and there is less to shed every month. She hardly has any period at all any more.

Here's a link about Mirena and also a link to a good Endometrial Ablation Discussion Group

I hope you feel better soon and find a solution that fits what you need.
Sending gentle s you way,
Beth

rachelle_d,

I hope you get some answers tomorrow. I know how fustrating it is to not know what is the actual cause of all the pain. They didn't find my fibriods until they did the pathology after I went through with the hyst. Like I said in my previous post, I'm gald that I tried the ablation first. I'd rather know I exhausted all my options before going through with such a major surgery. I think your wise to be considering all the options.

I hope that you are able to make some good decisions with your dr. and whatever you decide to try I pray you will find relief. Keep us updated please!

Jen

I went to the doctor yesterday and based on how many questions I was asking, she said she doesn’t think I am ready for surgery.

Actually, I found her rather brusque, but that aside, her answers just served to reinforce the many doubts I had after reading other women’s reports of their ablations.

The doctor said –- and the stuff I’ve read is consistent -– that ablation isn’t always successful in “younger women” (meaning those in their 30s) and that it often has to be repeated. In fact, many women end up having to have a hysterectomy anyway –- sometimes because it makes the pain and/or bleeding worse. I read that here and on other sites, and she told me the same.

She says that there’s really only a 60% success rate (hmmm... certainly not the 90% the Novasure propag... er... I mean... "brochure" would have you believe) with ablation and that some of her patients have regretted having the procedure done.

I asked whether she goes in with a hysterscope (forgive me if that's misspelled...) after performing the ablation –- to ensure all living tissue has been cauterized. She said no, because there’s not really any way to visually determine what’s been burned and what hasn’t. On visual inspection, there’s not really a noticeable demarcation. Some patients report that living tissue did regrow and had nowhere to bleed out, resulting in endometriosis. Others report fluid’s spilling out into the abdominal cavity, resulting in peritonitis. While she conceded these are risks, she was also seemingly perturbed that I was asking.

So why would she resent my questions and doubts? Am I not supposed to have done my homework and learned about the risks?

As for ligation, she can’t guarantee that either. It may actually increase bleeding and pain.

So she’s suggested that I try another pill: Yasmin. Since my 20s, I’ve been on Triphasil, Alesse, and most recently, Cyclen. This will be the fourth pill I try. I’m willing to try it for a few months to see whether it abates my symptoms, but the doctor is now suggesting that I start thinking about the hysterectomy.

She is reluctant to consider other types of tests such as CT and MR, believing that ultrasound is still the most effective means of seeing what’s going on in the uterus. I don’t know that I necessarily agree. Does either of you have opinions on this?

So the less invasive alternatives at this point appear to be:

- trying the Yasmin pills to see how they work
- having a Mirena IUD inserted
- considering alternative/homeopathic/complementary therapies

If the above fail, it would seem hysterectomy is next on the agenda. This doctor only performs abdominal hysterectomy, although I see no reason I’m not a suitable candidate for vaginal or laparascopic. I’d have to learn more about each of these.

She does seem keen on taking the cervix were she to do the hysterectomy. I'm not sure how I feel about that.

I’m also wondering whether it might not be worthwhile to get a second or even a third opinion, or whether it's really moot at this point.

There are a number of reasons hysterectomy doesn’t seem like an option –- at least this year. It’s still my first year in this new job (I started in January) and my relationship is still in its infancy (we only hooked up last July). I therefore can’t conceive of taking two months off work and asking my partner to look after me -– that includes housecleaning, laundry, cooking. It’s a lot to ask of him, and it would essentially imply cohabitation, even if on a temporary basis during my convalescence.

So… It’s really not encouraging news.

To recap, I'm going to try Yasmin, and if that fails, the Mirena IUD. Am I crazy in doing this? I want to ensure that I have tried EVERYTHING and exhausted every possible option first, but I wonder whether I'm simply prolonging the inevitable.

I welcome your thoughts on this.

*Sigh*

Whoever said "it's wonderful being a girl" is a bloody idiot and should be shot. :-P

I'm sorry your dr. was not so encouraging, and she had no right to be perturbed by you asking questions! I wish that I had taken the time you have to research more about the procedure and my options before I went through with it. As you said, the propa- er information leads you to believe there is an incredibly high success rate without ever any complications from the ablation. There are complications, and I've read many posts from other sisters here who did not have success with the ablation, unlike the brochures say.

As for not being able to see the living tissue, my dr. (he was the dr. I went to for a second opinon when I started to have so many problems) was adamant that he always goes back to look and if he finds any, he ablates it away. He told me that is what caused the Post Ablation Syndrome in my case and the acute case of endometriosis. My dr also told me the CT and MR are not as effective as the ultrasound for diagnosing problems with the uterus. I had 2 CT's done and they didn't pick up the problems I had, so I would say she is probably right on that count.

Personally, I think your wise to try all other options. I am glad that I had tried everything else first before I went ahead with the TVH, even the ablation. And I would definitely seek a second opinion. First, if you are a candidate for a TVH or Laproscopic Hyst. if it comes down to that, then it is definitely worth checking into. Also, it sounds like your dr. is lacking in some bedside manners, and you wouldn't want someone like that to perform a major surgery on you. I don't know if you've looked at the Suggest a Doctor link on this site, but you can find doctors in your area that other sisters have reccommended.

Good luck trying the Yasmin. I do hope it works for you! In the meantime though, I would still seek out a second opinion or a third until you find a dr. you feel really comfortable with and is willing to answer questions without getting perturbed. Keep us updated!

Take care, jen

It's funny, Jen. She's always been great with me at previous visits. Maybe a bad day? Or I wasn't the "supplicant" most doctors like to dispense verbal diarrhea to... I was actually armed with questions and information, and perhaps she felt challenged? Who knows...

I do concur that perhaps I should see whether my family doctor can refer me elsewhere for additional opinions.

Thanks, hon.

Ha ha ha! I've had some perfectly nice doctors get thier feather's ruffled too when I challenged what they wanted to do or what they were saying. I figure it's my body they want to go around poking and prodding in, so I'd at least like to know why they think it is so necessary and what exactly they think they are going to do! I think sometimes they forget we are not just dolls or pieces of meat, but actual people who deserve respect or at the very least an explanation. That's just been my experience though! I'm lucky that I found a great dr. the second time around. Even though I liked my first dr., she couldn't compare to him in experience, knowledge, and compassion, and I never looked back.

Again, I hope everything works out for you. Keep me posted! Jen

Hello again,

Even if you really liked this doc, and even if she was just having a bad day, it's still good to get additional opinions with any major medical decision.

The rollerball ablation I had did use a hysterscope, so my doc saw that all the tissue was ablated okay, but I also was found to have adenomyosis. Some of the fibroids he was removing during the procedure were actually large nodules of adenomyosis instead. Since the adenomyosis is within the uterine muscle layers it can't be reached with the ablation. After the ablation the adeno bled with my cycle but was trapped behind the scarred lining and caused extreme cramping as the uterus was trying to expell it. So I was one of the statistics of when pain can be worse after EA, but that's when I knew it was time for a hyst.

Because I did try other options, I had the peace of mind knowing that if anything did go wrong with my surgery or recovery, I wouldn't have regrets wondering if the complications could've been avoided had I tried something else. My hysterectomy may have contributed to the rectocele I developed after my hyst; requiring a posterior repair I had the following year. (That surgery was worse than the hyst.)

I know this is a lame analogy, so please forgive me in advance, but I thought of my alternatives kind of like treating a bad tooth. Some folks can have a tooth filled and the tooth is fine. Some might need a crown and be fine. Others might need a root canal or even need to have the tooth pulled. I would much rather try a filling or a crown before having a root canal or an extraction - unless I know the condition is so bad that there's little hope that a lesser procedure might work. I've had crowns before and had to turn around and have a root canal anyway - which is frustrating, yes, but i never regretted trying to get away with just the crown. (The frustration was more because of the money than my failed effort of saving the tooth.)

There was just no comparison between the discomfort of my ablation and the down right pain with my hyst. If I had been a candidate for a repeat ablation, I would have done it in a heart beat.

My sister that is doing so well with the Mirena was on Yasmin before that. She hated to give it up because it really cleared up her skin. I hope you do well on it ~ or whatever else you decide. You deserve to feel better. It would be great if you could feel better without having a hysterectomy, but unfortunately there's no crystal ball available. I will cross my fingers and say a prayer for you that you get your quality of life back soon.

s
Beth