amitymamaThe Attachment Parenting Community

KimberMama · 10-16-2006, 05:30 PM

I'm 37. I have had endo surgery twice, my uterus is prolapsed (stage 1-2), and GYN suspects adenomyosis. Intercourse is at times painful, my periods are heavy and painful, and I have chronic pelvic pain. We could try 3 different surgeries/procedures (that would need repeating over the years) and it still wouldn't stop the cyclical pain. I guess it is just time.

MY endo has been controlled over the years by BCP, including continuous BCP for the past 4 years. Anytime without BCP the pain gets worse, the bleeding heavier. But I don't want to take continuous BCP anymore.

It will be a LAVH, converting to TAH if necessary. It is unknown whether I will keep my ovaries. It would be nice to keep my hormonal function, but if I have many endometrial lesions they will have to come out. At my age the GYN recommends HRT if the ovaries are removed. Obviously the cervix is going (not possible to keep cervix in LAVH); my paps are always clear but the cervix is almost always involved in endo. I have multiple cysts on my cervix that are probably nabothian, but have never been biopsied. My mother had stage IV cervical cancer at age 35.

I'm ready, and I'm worried. I'm worried that I'll have the hysterectomy and that the pelvic pain won't end (since interstitial cystitis if often concurrent with endometriosis). I've been in pain for so long that it is hard to believe that anything can make it go away. I'm worried that I'll be trading one set of sexual problems for another set, like lack of desire and lubrication; sexual dysfunction is my biggest fear.

I joined Hystersisters last month, and also bought a great book. But really, I don't know anyone who had had a hysterectomy so young. In fact, among the AP circles it seems that going forward with a hysterectomy is akin to elective c-section. But really, I can't do this anymore.

Just thought I would share...I didn't really expect to be moving into the next phase so early.

Shannon · 10-16-2006, 06:03 PM

branwyn · 10-16-2006, 06:08 PM

hey mama, you sound like your thought processes are working you thru everything. it's a crazy surgery and i do hope you will feel better afterwards (i did, 90% of my pain was taken care of (BCP, etc never did anything for my fast-moving endo)).

i send you many many hugs, do not hesitate to message me if you want to talk (i had my TAH RSO when i was 29, 2 months before my 30th bday just a year and a half ago).

KimberMama · 10-16-2006, 08:07 PM

Thanks mamas.

The funny thing is that I'm not bothered by the loss of fertility, as DH was going to schedule a vas anyway if I didn't need surgery. I thought maybe we could do an UPLIFT procedure and endometrial ablation, plus remove any lesions/cysts and fix the bladder prolapse, but I would still have to take continuous BCP and the surgeries would need repeating. Like you Branwyn, the BCP haven't done much for the pain, especially over the last year. It has been like having one continuous bladder infection, only finally the GYN said it isn't my bladder.

Everything has been so much worse after having 2 back-to-back pregnancies (first was a horrendous vacuum extraction).

My grandma did say she had a hyst at 29 for endo; she's not a blood relation though. My mother had broad radiation of the entire pelvic area (stage IV cervical is cancer that has spread) that resulted in a crash course menopause at 35; she has her uterus and ovaries but they are non-functional and I guess the uterus is totally shriveled.

organicmama · 10-19-2006, 06:19 PM

Radition does that...kinda yucky to think about.

How is your mom anyway..stage 4 is pretty scary! I was not even stage 2.

I want you to know we are here to support you if you need a smaller group of women that are going through the ride of menopause and related symptoms.

Or even if you want to share how the hys is going. Not all things are comfortable on the market board.

I would like to keep your post on top so we can pray for you or light candles or do something to support you through your experience.

branwyn · 10-19-2006, 06:42 PM

i have heard tell (i have no statistics though) that most ovaries, left in, stop working within 2-4 years of a hysterectomy

organicmama · 10-19-2006, 06:52 PM

and I have not heard that specifically, but I have heard that the ovaries usually quit early due to the lesser amount of blood supply without the uterus.

I can't say for sure, but I almost wish I would have opted for overy removal becuase they ended up in radiation anyway (now not functioning properly-the shriveled thing so to speak) and that is one more thing to worry about.

KimberMama · 10-19-2006, 08:16 PM

Quote:

Originally Posted by organicmama

How is your mom anyway..stage 4 is pretty scary! I was not even stage 2.

I would like to keep your post on top so we can pray for you or light candles or do something to support you through your experience.

Amazingly, she was diagnosed 30 years ago! She survived. Unfortuntately, it has been 30 years of increasing health problems. The radiation colitis has progressed to the point where she wears Depends at all times and most of the time doesn't have control of her bowels. Years of diarrhea have left her colon so narrowed that they couldn't even manage a colonoscopy last month when she started bleeding rectally. And for anyone who wonders if "use it or lose it" is real, well yes, it is. She gave up on the estrogen cream because of side effects and has been unable to achieve penetration for nearly 20 years. Perhaps TMI, but I think women should know what radiation can do. Obviously, there were other problems and maintaining her sexual function wasn't a main focus to her.

The double whammy? She has rheumatoid arthritis. Between the two her health is very poor.

Thank you for keeping me in your thoughts, Kristarae. Hystersisters is so huge and it isn't where I feel at home. I have been at Amity's for 8 years now.

KimberMama · 10-19-2006, 08:26 PM

Quote:

Originally Posted by branwyn

i have heard tell (i have no statistics though) that most ovaries, left in, stop working within 2-4 years of a hysterectomy

I'm still so conflicted. I think they should come out because of the endometriosis. I know first hand that a chocolate cyst on the ovary is painful! The doctor said she would probably have to go back in for them at some point anyway. I was concerned about HRT, but now I understand that replacement is at far lower levels that BCP.

Still, it seems that the risk of sexual dysfunction is lower if I keep the ovaries. So I really need to talk about everything with my doctor, ask her what she uses for HRT (I am ethically opposed to Premarin), ask if she prescribes testosterone, etc. She needs to understand that preserving sexual function is highly important to me.

My mom's ovaries have been inside her, not functioning, for 30 years, and now she has an ovarian cyst. She's not a candidate for laparoscopy, so if they need to remove it she'll have abdominal surgery. She's so worried that it's cancer. It showed up on an abominal CT she had in August, they missed it, and now they're going to do an ultrasound. Hopefully it will just be gone. I wish they had at least done a CA-125 blood test on her. If it is cancer and she knows before my hysterectomy then I will definitely have mine taken out.

KR, sorry about the "shrivelled" comment...I was just repeating my mom's words without thinking about how they might make someone else feel.

branwyn · 10-19-2006, 08:29 PM

Quote:

Originally Posted by KimberMama

Perhaps TMI, but I think women should know what radiation can do.

i agree with this, i won't argue that it's up to each individual to decide what they feel is best for them. but long term effects of radiation can be crazy. one of my friends had breast gone to brain cancer and after 3 years of radiation her legs were black and hard as rocks. the doctors say the radiation killed her, not the cancer. okay that was way TMI eh?

anyway mama, not to get totally ot - when i had my hyster i didnt feel there was hardly anyone here i could talk with and hystersisters was so big. well i found 2 mamas here that had hysters that i talked with and i talked to my mom. i am so so so happy to have ya'll to talk with now.

KimberMama · 10-20-2006, 12:02 AM

[quote=branwyn;2315425]i agree with this, i won't argue that it's up to each individual to decide what they feel is best for them. /QUOTE]

Absolutely! With cancer there are choices you have to make. I don't think my mother had any idea what the radiation could do to her, and with stage 4 it was broad radiation and I am sure that technology has improved a lot since then (such as proton therapy). She said they couldn't risk surgery because the cancer wasn't contained (I'm thinking it was 4a).

Still, I am sure that she is glad that she has been alive for the past 30 years, watching her children grow and now having grandchildren.

organicmama · 10-20-2006, 01:15 AM

Kimbermama...no worries on the shriveled comment. It is true and I was not at all offended by it.

Branwyn, ya know, sometimes not having experience with all that you have been through is one of the things that makes people like us resistant to share things on the market and such.
So many young mama's that really dont understand....

I am so thankful we have a littel corner of the Amity world and I am glad you ALL are here.

Good you are popping in Branwyn.....Feel at home here as best as you can.

Kimber mama I am so thankful to hear you mom is still alive...sad to knwo she has had struggles, but alive is amazing at her stage and how she has overcome it.

EmoMom · 10-29-2006, 08:34 PM

Heya Kimberly! I really don't have much to add that hasn't been said, but just wanted you to know I'm thinking of you. I had my TAH 2 years ago -- got out of the hospital on Thanksgiving day. Ovaries were removed last September.

The best "advice" I can give you would be to just take it easy and not expect too much of yourself. You'll heal much more easily if you just take your time about it. I did spend a lot of time at HysterSisters in those first few weeks -- they are very good for fast answers to specific questions.

Wishing you all the best.

organicmama · 11-03-2006, 10:32 AM

Hoping you are doing well mama. This surgery is right around the corner and I am thinking of you today.

KimberMama · 11-03-2006, 06:00 PM

Quote:

Originally Posted by organicmama

Hoping you are doing well mama. This surgery is right around the corner and I am thinking of you today.

Thanks. I had my pre-op today as well as pre-admission testing. I asked for some T3 to help with the pain until surgery, so hopefully things will be better and not worse between now and then.

Did anyone feel really down right before her hyster? I don't know if it nervous exhaustion or just a repsonse to the constant pain.

I'll probably lie low for the next few days, focusing on spending time with my family. Deanna (DEandF) will update here at Amity's after the hysterectomy.