Possible adenomyosis and endometriosis

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Originally Posted by mrswendygray Just had a hysterectomy on Friday, due to adenomyosis, and a myoectomy last year. So far so good. I've heard nothing but positive reviews from friends and associates. Ready to feel like a new woman like them . Be sure to follow your doctors orders for a speedy recovery.

Thank you for the positive report! I hope you have a great recovery and can get back to "normal" soon .

oh wow good for you I hope you feel better quick even though it sounds like you're doing ok!

Alana, you've been through quite an ordeal for such a young person. I pray that the Lord will heal you, even if he uses the doctors to do so, and that you are led in the right direction.

Question: has your doctor sent you to get a MRI of your uterus, to see exactly what's going on? No assumptions should be made regarding your health. Is he someone who you trust and feel comfortable with? Do you feel like you need a 2nd opinion, or just a little more time or reassurance? If you've been experiencing these problems all of this time, then you can surely hold off to see another doctor/specialist. Your comfort is most important. Even if you have to go through with it, it's ok. At least you will have peace of mind, knowing that you took extra measures.

Remember, you ovaries a nd cervix can stay in tact, as long as your health/history is good. Be sure to firmly discuss with your doctor.

Hope this helps. Will be praying for you. Please keep me posted.

Wendy

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Originally Posted by alana3 Hi, My name is Alana I'm from south Florida and I'm just looking for reassurance and answers I guess. I was scheduled Friday for a laparoscopy and hysteroscopy, but when I went into my preop yesterday, my doctor said that he thought I more than likely had adenomyosis. Let me start with my history. I started bleeding when I was 3 years old (yes 3) and went to a specialist in Fort Lauderdale who traumatized me. When I turned 14 (closer to 15), I began my real period. The first one wasn't bad, but after that I began horribly painful periods for 2 weeks every 2 weeks. I would throw up, miss school, etc. My mom took me to a doctor where they put me on birth control which controlled it for many years. Fast forward to college, I had a very healthy sex life, my periods were manageable (except I hated them because who really wants to bleed). I broke up with my boyfriend and started to have sex with another boyfriend when I all of a sudden, I couldn't have sex anymore. This went on for years until I finally got a vulvodynia diagnosis. It took 7 years until they cured me of that (I got a vestibulectomy in December of 2012 and now my sex life is good again). Now, I am 28, after my vestibulectomy my periods became excruciating again (they always hurt but this was something way different). I changed from birth control to birth control and now am on Zenchent 2 pills a day to prevent the bleeding- otherwise I bleed. Previously, before Zenchent, I bled everyday for about 5 months. So my doctor strongly suspected endometriosis. So yesterday I was all set to go into surgery Friday when he said "I think you honestly have endo AND adenoymosis". I asked him what it meant and he said that I could go thru the laparoscopy and do MORE hormonal medicine which he had an idea (but I'm just so over taking medicine and try this and that and have it not work). OR the cure for adeno was a hysterectomy. I sorta quickly jumped on the hysterectomy bandwagon- but than he said he wanted to remove my ovaries. So now I'm not sure. I'm only 28 what will happen to my sex drive (that currently isn't there anyway haha), vaginal dryness, menopause?! I will also mention that I am getting a hysteroscopy on Friday still- and want to know what to expect from that. Bleeding gives me anxiety since it happens so often I really don't want to but I definitely think I should and I want to be prepared. So PLEASE please help me! I'm sorry my post is so long, but I really need answers from people who've been there. Let me also add I don't want to keep getting a million surgeries, I hate gynos and this is just awful. I also hate the drugs they keep experimenting with. Yuck! My parents, boyfriend and friends none of them can understand because they don't have this pain. Everyone is just like OH take your junk out you'll feel better, but I still cant help but worry. I cry so much now and I really want to stop (probably a lot of this is from the hormones) so any suggestions anyone may have I would really appreciate it! Thank you in advance!

Thank you so much for that. Really. I haveny had an mri would that show anything? I do trust him but I def am getting another opinion. Anything else that I should do? I've always wanted a hysterectomy but when faced with it I'm scared now

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Originally Posted by alana3 haha yeah I just read a scary article that I sent to my boyfriend I flipped. Side effects: hot flashes, fatigue, insomnia, weight gain, urinary incontinence, joint pain, hair loss, vag dryness, headaches, loss of sexual desire/pain, becoming emotional, reduction in testosterone, cardiovascular and skeletal diseases, PLUS risk of dementia. AND THIS WAS PARTIAL HYSTERECTOMY. OMGGGG is this true?!

Yes, all these things can happen. More so with ovary removal, but removing the uterus can cause some problems with the ovaries.

I currently still have some insomnia and fatigue, and I have developed a belly, classic post hyst belly. For whatever reason more weight tends to go there, friends of mine with hysts all have the same thing.

YES, and MRI would show adenomyosis in some cases. MRI can rule in adenomyosis, though it cannot rule it out. Sometimes it doesn't show up, much like with endo.

However, my big concern with this adeno diagnosis, is that endometriosis causes ALL the same symptoms. Heavy bleeding, irregular bleeding, the pain you've been having, etc.

This is why I had my excision of endo and myomectomy first, and then when I still had problems, and most of my problems resolved while on Lupron, and I had done PT and ruled a lot of other things out, it was very clear I had adenomyosis, and my doctor and I had no problem with going for the hysterectomy.

It's also concerning that your doctor is taking this approach. Most endo specialists believe in organ preservation, and understand that hysterectomy and oopherectomy are not cures.

I just had hyst 3-6-14. If they can leave 1 ovary, you can keep your hormones and avoid HRT. I too had and adeno and endo, cysts with torsion, irregular uterus, and giant cyst on cervix. I was thrilled to get rid of it all - kept rt ovary. But I am done having kiddos. I'm age 39. I'll likely have to give the rt ovary in the next 10 yrs too, but at least I'm not in surg menopause. Best of luck. NGO w your gut. Literally! ;-)

Was it worth it? Im just sick of the pain and the hysteroscopy made it worse

Good luck with your decision Alana. I have been in pain that has just gotten worse over the past few years. But even more so since last June. Bladder issues. Pressure/pain, frequency... first interstitial cystitis was the suspect. (Had cystoscope/hydro) and no firm conclusion! Then endo was suspected. I took 2 months just to decide to do the diagnostic lap. Dr thought endo was growing on top of my bladder causing my bladder issues and pain. In DEC my lap confirmed endo, have tons of pix and my Dr excised the endo. My pain was the exact same as soon as I got of pain killers at 5 days post op. Adeno is suspected. I am so certain it his adeno at this point. And possible ic as well. My cycle sends my bladder into a flare each and every month. I have researched the heck out of everything. And having hyst next week. I have read for adeno be sure to have the cervix removed as it is part of the uterus muscle and adeno can remain in it if left. I am 37. Keeping both ovaries as they were very healthy during my lap. My Dr says the only true way todiagnose adeno is upon hysterectomy and dissecting the uterus. Even hysterscopy can miss it if they don't get the section(s) that has the adeno