Looking for someone else w/Adeno & PCOS

Hello - I am new to this website, although I have come across it countless times over the past few months as I tried to do research on the internet.

I would love to speak with someone who has had a hysterectomy for Adenomyosis. I am 32 yrs. old, no children and have PCOS, as well as "suspected" Adeno. from a Lap. which showed an "enlarged, soft & boggy" uterus.

My Doctor feels that a total hysterectomy (leaving the ovaries) is the only thing he can do for me at this point. I "am" getting a 2nd opinion on Tuesday to be on the safe side.

Is there anyone else out there that has had Adenomyosis alone or "with" PCOS?

Thanks,
Kathy

Hi ((Kathy)) and welcome! I'm glad you decided to stop by and post

You will find many, many women here who have had similar issues or currently researching/educating themselves on their options to help them decide what is best for them. Its been a huge source of comfort & help being able to share with others who understand because they have been there....

I had my own surgery 5 yrs ago. Mine was done for a few different conditions, one being Adeno. I suffered severe pain, prolonged bleeding < my last period lasted almost 3 months right up to the day of my TAH > I had been trying various hormone treatments to help alleviate the bleeding/pain, I underwent to D&C's along with mutiple other tests, ect..all to no avail :-(

I researched for months, the only option at the time for Adeno was a Hyst. There are many more options/treatments available today than just a few short years ago!
After many, many hours of reading anything I could get my hands on, numerous talks with my Dr and much thought, I decided the Hyst was the best option for me and my conditions & symptoms.

It has been anything but easy unfortunately but I knew going in that nothing in life was guaranteed and this surgery like any other surgery carried risks. I suffered complications resulting in 2 additional surgeries and have experienced chronic pelvic pain & nerve damage since. My pain & symptoms are controlled...I am anything but bitter over things.

I share this not to scare you but to urge you to learn all you can about any & all possible risks of this surgery. Seek out your options < who knows there maybe something less invasive that can provide you with relief > but then there may not be and a Hyst is your only option. The more you know going in, the better equipped you are to deal with things that may occur afterwards.

I found that making a list in which I would include my diagnoses, their symtpoms, any viable treatments then the risks & benefits of each one...it helped me to weigh the pro's & con's of each. It would also help me discover questions/concerns I hadnt thought of before to discuss with my surgeon.

You will find for the most part, that many women are happy with the outcome of their surgery As you read through the forums here, please keep in mind that many of those remaining here < Post-Op > is for support..help with further issues or complications they maybe experiencing. The women with successful surgeries arent in need of a Hyst support forum and have went on to enjoy theri new, pain-free lives!! Just a thought as things can appear skewed here with those suffering problems...

Here are some links I thought might provide you with some additional insight and info into the conditions your suffering:

Understanding the Basics of Adenomyosis:
https://www.hystersisters.com/vb2/lin...n=jump&lid=297

PCOS.net - Helping Women With Polycystic Ovarian Syndrome:
https://www.hystersisters.com/vb2/lin...n=jump&lid=103

Hysterectomy: Everything You Should Know: https://www.hystersisters.com/vb2/lin...=jump&lid=1244

All those and more are located in our Resources Directory

Good for you for opting for that 2nd opinion It can really help when trying to decide in giving reassurance to any doubts you may have or in discovering you have other options.
You are your own best advocate when it comes to your health and only you will have to live with the outcome, good or bad, of any treatment you opt to have. The reason, IMO, its so important to educate yourself on all this...its our body, the only one we have!

Sorry, I didnt mean to write a short novel here <blush>

Good Luck with everything (( Kathy)) No matter what option you choose, please know we will be here to support you as you go through it. I do hope you will continue to ask questions, seek out answers and share how things are going.
My thoughts and prayers will be with you that you may soon find those answers and most of all relief to all you suffer....((((hugs)))))

Hi Sheri and thanks for writing all of that. I have been researching my heart out for a long time now because my Doctor told me (in Sept. of 2003) that he estimated I had about 2 yrs. before I needed a hyst. Well, more issues have come up now and at my last visit, he informed me that the only option he sees for me at this point is a hyst.

My main concern is this: What if he is wrong about the diagnosis of Adenomyosis? After all, it cannot be 100% proven without the pathology report "after" the hysterectomy. I don't want to keep going through surgeries because the Laparoscopy caused me enough pain to last quite a while. What is the percentage of women who have hysterectomies for a diagnosis of Adeno., only to find out that no Adeno. was never found in the pathology report?

(As a side note: My periods have always been irregular due to PCOS, but now the pain associated with my periods is so horrible that I can hardly function for a couple of days out of the month. However, I do not have the intense & uncontrollable bleeding often associated with Adenomyosis. He diagnosed it based on the enlarged, soft & boggy uterus at my Laporoscopy, and then of course along with the symptoms I have been experiencing).

Also, why is it important to take my cervix too? I did have severe dysplasia (Level III) a few years ago, but have kept up with my pap smears and have been totally clean ever since he did the Cone. As long as my paps are kept up, I don't see the need to remove the cervix.

I would be really curious to know how many women out there were positively diagnosed with Adenomyosis, but did not have the uncontrollable bleeding commonly associated with this.

Thanks,
Kathy

Hello,
I am not sure what symptoms you have or what type of experience you are looking for but I have/had both and just had an LAVH on 1/4. PCOS is not giving me any issues I am aware of right now so haven't done anything about that. Used to have one or two cysts show up and hormones go a little out of balance with it then they would disappear and things would straighten out. The adenomyosis and fibroids is what I had the hyst for. I was having pain three weeks out of the month in my lower right back and some heavy bleeding and cramps. Bleeding wasn't the worst as I thought I was just getting older and it was going to happen. The pain was what caught my attention. Once advil stopped even taking the edge off I went to get it checked. The doctor gave me 3 options. Ablation which she said would help the bleeding but they haven't had good results with pain relief from it, hormones which would only help for 6 months as she would not give them to me for more than 6 months and hyst. Pain was the issue with me so ablation was out. Hormones are not something I was willing to try as it seemed it was only prolonging the inevitable and from past experience with them not something I adjust to quickly. I'm 41 with no kids and even though I love kids there has always been some reason I didn't have them and at this point in my life I felt it was too late to start and hubby has 2 of his own already and really didn't want more. If we change our my mind there is always surrogate options. I think it is too early for me to tell you that my quality of life is better from having it. I can tell that at this point I am in less pain 13 days after surgery than I was before it. I too was afraid I would have the surgery and the pathology report would find nothing. I felt much better about everything once my pathology report came back. Adeno it was and bad as the doc translated. My big delima was the cervix or not. Doc was afraid that it was diseased too as with deep penetration I had shooting pains down my leg and in my back. So I told her to decide once she got in there. She did take it and although it did not show adeno it did show some extensive inflammation that I am having her explain to me today. Please send out any specific questions you have and I am sure someone will be able to give you their experience from it. Good luck and do what is right for you. Everyone is different so get all the info you can and do what your gut tells you.

Your welcome ((Kathy))
I wish I had the answer to your question concerning suspicion of Adeno Vs positive Dx. Have you had an MRI? Sometimes the results of this test can show Adeno but not always. Another type of testing such as a Hysterscopy or biopsy can also show Adeno. The only problem with that is that unless the area taken for sample is the one that is affected by this it will be negative. I had both done, neither revealing I had it...

As for the cervix, IMO, a healthy organs should be retained whenever possible. The cervix contains nerve endings that contribute response sexually plus it can provide support for organs such as our bladder. I was dx'd with a Vaginal vault Prolapse about 1.5 yrs ago due to support issues from losing my cervix There is some great info here about the pro's & con's of retaining/removing it here.

Here are some links to some threads here that contain some great info along with opinions and thoughts from others here :

Keep Cervix or not:
https://www.hystersisters.com/vb2/sho...hreadid=120068

https://www.hystersisters.com/vb2/sho...hreadid=125675

FYI-Cervix~ Should it be removed?? Good info:
https://www.hystersisters.com/vb2/sho...hreadid=116016

I hope they can help answer some of your questions

Sounds like you've been doing that homework & asking the right questions, kudos to you !!

(((((((((((hugs)))))))))))))

Ok, I hope you guys see this response since it's a couple of days later. I went for my 2nd opinion on Tuesday and it was AWFUL! I should have known better because I "did not" get a personal recommendation.....I just went to the closest female Gyno. that took my insurance. Lesson learned #1: Don't go if you cannot pronounce the last name. Lesson learned #2: Always get a personal recommendation.

Mind you, I try to have an open mind regarding everything, but this woman was so religious (Muslim) that she had tatoos all over the backs of her hands, dyed orange fingertips and was wearing the typical Muslim headress (turbin, or whatever it is called). I thought, okay, I need to be open minded about this because she is an educated woman. But the first words out of her mouth were, "Do you practice Yoga?" Then it went downhill from there.

I showed her all of the paperwork from my Doctor over the past 4 years. I have had a Laparoscopy, Colposcopy, Hysteroscopy (I think it's called), Tubal-something or other, Uterine biopsy, Cone Biopsy, 2 hemorrhagic cysts removed from Rt. ovary, Transvaginal ultrasound, CT, bloodwork up the ying-yang, etc., etc., etc.

Diagnosis: Level III Dysplasia (positive Carcinoma in Situ of the Cervix, cured by Cone), Polycystic Ovarian Syndrome and Highly suspected Adenomyosis.

My Dr. does not want my on BCP b/c of my age (32) and I smoke. He doesn't want me on harmones period b/c of my family history of Deep Venous Thrombosis (I think that's what it's called for blood clotting)....my dad almost died from a blood clot in the leg, as did his mother, my Grandma.

So - I live w/ Polycystic Ovaries....no big deal. I don't ovulate and that's fine because my husband and I don't want children. But the periods are HORRIBLE!

I pass tons of clots, that actually hurt my cervix as they are coming out. I get nauseus (sp?), have diarrhea, pain that shoots down my thighs as well as pain positively in the uterus, lightheaded, headaches, I have to pee all the time and I bloat until I'm about 5-6 months pregnant. Vioxx was helping, but because of my irregular cycles (due to PCOS), if I didn't take Vioxx at least 24 hrs. in advance of the pain, forget it. And now they've pulled it off the market anyway.

This 2nd Doctor told me that I need to pray more. I need to learn Yoga and meditation. She also told me to get rid of stress in my life because that adds to the pain. Oh, and this was the BEST: "Don't tense up when you are in pain because it will make the pain worse." NO-DUH LADY! She also told me I need to quit smoking because smoking causes ovarian cysts, uterine cancer & pain. Well.....quitting is hopefully in my future but not right now.

So she told me if I wasn't willing to quit smoking then she would recommend a hysterectomy as well.....and remove the cervix because of the history of CIN III (yes, I'm positive for high grade HPV).

I asked her point blank: What other options do I have other than a hysterectomy that would not require me to be on medication? She said: LUPRON. I said, "No way. I already know about it and do not want to go into a state of temporary menopause just to get rid of the symptoms for a few months." Then she said, "how about an endometrial ablation?" She said they could basically kill the lining of my uterus so I wouldn't have periods anymore. I asked her if that would work for Adenomyosis and she said yes! Well, I have researched it and everything I have read said it usually doesn't work with Adeno. if the main problem is pain....it will help with bleeding though.

Does anyone have any thoughts on all of this? Should I get a 3rd opinion now?

Runt,

In my opinion you don't have a second opinion. You have no confidence in this doctor so their opinion is worthless to you. I would find one more that you feel good about. Just my thoughts...

Hi ((Ruth))!
Thanks for sharing I'm sorry though it didnt go so well
I would suggest a third opinion and to also perhaps speak with others who have had an ablation, see what symptoms it helped for most part as well as the success rates they've experienced. Here is a link to an excellent site on ablations:

Ablation Discussions and Support:
https://www.hystersisters.com/vb2/lin...n=jump&lid=632

Hopefully, you can gain some further insight into if this is a viable option for you other than the Hyst

Here are a couple other links I found that discuss Adeno and available treatments otions for it. Perhaps, printing these off and taking them to your next appt to discuss with your Dr could be of some further help to you?!?

Diagnosis and Treatment of Adenomyosis:
http://www.drcook.com/adca14.html

Treatment Options:
http://www.geocities.com/zoieangel/treatment.html

Good Luck with everything ((Ruth)) Please continue to keep us posted on how things are going...(((hugs)))

Thanks for the links. Yes, I think I need a 3rd opinion on this. One question I have is whether or not an EA is more dangerous if you have a very tilted uterus (mine is so retroflexed that it couldn't be seen on the transvaginal ultrasound)? I know that one complication from an EA is damage to other organs like the bowels.

Kathy