Adeno question

For those of you who had adeno. I have horrible pain ; contraction like pain at ovulation. Along with pain and pressure all the time.

I am curious if pain continues after a hyst if ovaries are left?

Hi,
I have suspected adeno and confirmed endo (removed last month). I have pain like you describe during ovulation. And thru out the month. Worse the entire week before my cycle. I have decided to have a hyst. And keeping my ovaries. I am 37. My Dr has explained that I will most likely still have ovulation pain (since I have it now) but the hyst should eliminate the rest. I am willing to try as I feel my ovaries are so important. Love to hear from others that have actually gone thru the procedure

Sandrabees that's not what I wanted to hear!

My obgyn is dead set on either lupron or radical hyst. And I am not ok with either. I have an app with an endo specialist in a few weeks to pick his brain on ideas. It's so hard to wait when you are in pain all the time . I hope we both get some answers!

	Quote:
Originally Posted by StephanieB. My obgyn is dead set on either lupron or radical hyst.

Please clarify if the plan is a radical hysterectomy as that type of hysterectomy includes removal of part of the vagina and lymph nodes and is usually only done for advanced cancer. If you need a radical hysterectomy, you would want an oncologist.

Weiser I am sorry I didn't mean removal of lymph nodes. This terminology has me confused.

She wants to remove uterus, tubes, ovaries, and cervix. She believes this will cure the endo.

I have some ovary pain, I had an endometrioma removed at the time of my hyst. I had very bad pain over that ovary before my hyst, and very specific and different healing pain in that area. Due to immune system issues I had to stop my progestin to suppress endo growth for about 4 months. About a month ago i start to have pangs again, so I am back on my meds! Gotta say though it was perfect timing since my sinus infection had just cleared up.

Still the pangs and pains now are much much less than anything before my hyst and endo excision. There is also a possibility it is adhesions, since I have a bad history of those.

I definitely think it is a good call to meet with an endo specialist, as the options your current doctor is giving you are not great. Definitely make sure you have all your surgery records, including photos, dvd if available, surgical reports, and path reports for the endo specialist so they can review your first surgery and see how effective your first surgeon was.

This is so important in moving forward and understanding the endo. My second surgeon reviewed my records and declared my surgery "good", he saw no endo left behind, very wide margins, and that everything looked good. Which made it much clearer that I likely had adeno. It also meant that when I had the endometrioma, despite 6 months of Lupron, and 3 months of BC, and only 1 period in the 10 months between surgery, that my endo at this point is still fairly aggressive.

However, this does not mean getting my ovaries out. Progestins have been shown to have about the same effectiveness as Lupron in suppressing endo growth in many studies. There are also plenty of progestins to choose from, which is great since if some don't agree with me, I have other choices.

While you wait for your appointment consider getting some help with the pain. While my situation was getting sorted I actually decided to go on Lupron, that and PT kept me functioning as I kept test driving doctors. It might be worth trying BC that would suppress your periods and ovulation, or PT, and when needed have a prescription for really bad pain.

This is so important so decisions don't get rushed. It unfortunately can take time to find the right doctor. Working with my current team to keep pain at bay, and improve my functioning as best as possible helped a lot in getting the right care further down the road.

She did offer me the depo shot and implant. I had a mirena almost a year ago and that was a nightmare.

I had surgery in sept last year where endo was confirmed, adhesions and scar tissue were removed, ablation was performed and endo was lasered.

I have every biopsy result, and am waiting on the last 2 ultrasounds to take to the specialist. I have all of my pictures as well. Including my family doc (where this all started) this makes 5 doctors in the last year.

I have been on errin birth control and suffered many side effects, I am not wanting to get an injection that I can't take out if I am having problems. And due to a blood clotting "trait" that was discovered during blood testing for PCOS (negative) I can not take any type of estrogen based pill.

I'm just over hurting and not being able to function as a normal person. I am only 30 years old, I can't do things with my children or walk withy husband or even be intimate with him at this point.

I went for my annual app a few weeks ago and mentioned the symptoms to her. Which I had done before she didn't listen or understand I'm not sure. But, she believes I have adeno as well.

Sorry for the novel no one understands how I feel here. Hubby is supportive an hates seeing me in pain but can't relate. I just want to be normal again.

Stephanie I feel your pain! Definitely get to the endo specialist. Most gyns believe hyst and removal of the ovaries will "cure" endo BC taking away the estrogen source will cause the endo to shrink up and die. I had my endo removed in Dec. During a diagnostic lap. I have had very little relief of my pain symptoms though. I have great surgery pix and have had them reviewed by 2 endo specialists... who both believe my endo was removed deep enough.

My pain daily is my lower back. Along with constant urgency/frequency bladder issues. Interstitial cystitis is possible for my bladder issues, but my last cystoscope came to no conclusion. I am seeking a 2nd opinion on the bladder from a diff urologist.

After my lap (and excision of endo) I stopped pain pills at 5 days and my low back pain and bladder pain was the exact same. This leads my Dr to believe adeno is causing much of my pain.

Originally when my doc thought I just had endo he suggested total hyst taking the ovaries. I am 37and very much aagainst my ovaries being taken. I know they are in good shape, no endo etc.

I am also going off of my mother's history. She never knew she had endo. But ultimately due to horrible pains finally had a hyst (and kept ovaries) when she was 43. She was told after that she had severe endo. Not sure if adeno was tested or mentioned. But she says it was the best decision she ever made. She felt 1000 x's better and got her life back.

I do believe endo needs to be excised and it is important to have a Dr that is able to recognize and remove it properly.

I am hopeful (& willing to give a shot) at hyst and keeping my ovaries.... I can tolerate ovulation pain and hopeful the rest of the month pain will be gone. But my Dr is also going to look and remove anymore endo if present

Sandrabees- I too have that frequent urge to urinate. I feel this pressure, and if I don't go right away it turns to cramps. I feel like it's more because my uterus feels so swollen. At different points during my cycle it feels more swollen in that area than others.

Ovulation is the absolute worst though. My uterus basically locks up (its the only way I can describe it). It's like a Charlie horse in your uterus for 8 to 10 hours. This last month it went on for almost 3 days.

Everything I have read about adeno has said it is triggered by estrogen like endo. My big question is if they leave the ovaries will I still cramp this way? I would think that by taking out the uterus and cervix it would have to help right? I mean taking out the organ that's doing the cramping has to help some. I just have to believe that.

Thank you all for sharing your experiences with me. I am hoping someone who has had these same symptoms and had a hyst will reply with her experiences too. I still have a 3 week wait to see the doctor, I'm going to go nuts by then!

Yes, for me it feels like labor contractions at its worse. My Dr said the hyst will take away the uterine pains/cramping which for me radiates to my lower back. I know i have a retroverted uterus as well... not sure how that plays into my pain. I believe with ovulation pain you would still experience some of the PMS type symptoms associated with the estrogen surge that occurs at ovulation? Will you see the endo specialist in 3 wks? Is that who would be doing your hyst as well? I just got mine scheduled yesterday for March 19th. Trying to wait until after spring break yet recover/rest before school is out for the year (I have 3 kids). Hubby is supportive but other than that I have little help