Can I get some perspective/advice on a @ issue?

[emilyj]

Here's the lowdown - I was diagnosed with stage IV endometriosis about 3 years ago, and despite several surgeries and medication attempts, it's pretty much fucked up my reproductive system. Without going into the full details, I'll just say that I haven't had a period since last July, yet I'm still in pain every single day.

At my last office visit, my ob-gyn said that my two options to get any pain relief (based on how the endo has scarred and left adhesions in me) were to a) try cutting the round ligament (which she didn't recommend) or b) having a hysterectomy.

I'm at the point now where I can't take it anymore. I can't deal with the pain. It's affecting all areas of my daily life, and I'm done.

I'm 34, and I have no kids. Right now, we do not want kids.

I'm about to make an appointment to go back and see my ob-gyn and tell her I can't take this anymore. Knowing that the likely course of action here is probably going to be the hysterectomy, does anyone have any advice/suggestions as to anything I should be thinking of to ask?

[Deleted]

I have no clue what you should be asking but I wanted to express how much empathy I have for you. That's gotta suck hardcore.

[emilyj]

Thanks Hab - it does blow pretty bad. I'm afraid my judgment at this point is so clouded because I'm pretty much at the point of "Just make it stop, I don't give a shit what you have to do."

[heyjude]

I'm so sorry.

[pixy0stix]

I'm sorry.

My coworker is young(ish) and had a hysterectomy. I gather it's from a situation similar to yours. She said it was the best decision she ever made. She kept her ovaries, so she still has hormones, and didn't go through early menopause.

[Deleted]

You can slap me for being an insensitive heifer but you said you don't want kids right now. Before this issue came to a head, did you think you might want them?

[emilyj]

May 15, 2012 23:10:53 GMT -5 @habbsies said:

You can slap me for being an insensitive heifer but you said you don't want kids right now. Before this issue came to a head, did you think you might want them?

It's not insensitive at all.

Since I got married (almost 3 years ago), my H and I have firmly been on the 'no kids' bandwagon. Before that, I never really felt a strong urge to have kids. The way our jobs are currently and will be for the foreseeable future, kids aren't an option even if we wanted them.

The only thing we've been able to say with respect to that is 'How can we say now what we are going to feel like in 4 or 5 years?' Obviously we have no crystal ball, and we can't. He has said his first priority is me and my health (there is question of if I could even safely carry a child), and after that? His feeling is that if we did change our minds, there are plenty of children in the world that need families to love them. I think that's a great way to think about it as well.

[Deleted]

In that case, I think you're good. Not that I can speak for you of course but if children have always been a take it or leave it sitch for you, then I really think you'll be fine.

[backinpgh]

I'm sorry you're having to deal with this kind of thing

Perhaps you should speak to a counselor, it might help resolve any child-related issues that might arise before deciding on the procedure. Surely there are some professionals who specialize in women's health related issues like this. Good luck.

[curmudgeon]

I am so sorry you are dealing with this. The only thing I have to offer is when my mom had her hysterectomy she found a lot of helpful information here: www.hystersisters.com/

[marie427]

I'm so sorry. I can't imagine the pain you're in. I'd be the same way - I would do anything to make it stop. In case you do change your mind about kids, because you are open to other ways to grow your family the hysterectomy doesn't sound like a bad idea. Best of luck with whatever you choose to do.

[Melissa W.]

I'm really sorry you are going through this. Hugs

[Deleted]

I am sorry you even have to consider this, but I hope you get much needed pain relief.

[EloiseWeenie]

I'm sorry you're in so much pain, and you have to make this decision.

[dirtyred]

I had a hysterectomy three years ago, and it was great. I went from all sorts of daily issues/pain to feeling normal again. Wonderful!

Things you could ask:

Will it be a vaginal, laproscopic, or abdominal procedure? If abdominal, vertical or horizontal incision?

Will you take my appendix? Will you take my cervix? (Mine's gone, no more Paps!)

How long off of work?

How long before I can have sex?

How long before I can resume normal activities? (There will be restrictions on how much you can lift depending on what type of surgery you have)

What are possible complications? What is the frequency of complications?

And a little surprise I didn't know--you can have vaginal bleeding for up to 4 weeks post op, so don't throw out those pads/panty liners just yet (you can't use a tampon post op).

Good luck; you'll love how you feel afterwards.

[lyssbobiss, Command, B613]

I'm so sorry. I completely understand the frustration. I also have endometriosis and I have literally begged my OB/GYN to perform a hysterectomy but she will not do it until I am at least 35. After my son was born, the pain was so much worse.
As far as questions go, I would be concerned about the possibility of removing other organs if the tissue has spread to them. I'd also want to know if she recommends hormone replacement therapies or anything for after the procedure.
Aside from that I'm not completely sure. I'm sorry you're going through this.

[charminglife]

I'm sorry this is happening to you and that you're in pain. Have you gotten a 2nd/3rd opinion from other doctors? I think before you pursue anything as drastic as a hysterectomy it is good to make sure you know all of your options.

[desmerelda]

I too am sorry that you're dealing with this. My sister has endometriosis and I have seen how awful it has been for her. I have no personal experience apart from that, so cannot offer much advice besides that I agree with charminglife that a second opinion is always a good idea.

[Meganne]

May 15, 2012 23:34:32 GMT -5 curmudgeon said:

I am so sorry you are dealing with this. The only thing I have to offer is when my mom had her hysterectomy she found a lot of helpful information here: www.hystersisters.com/

I will second hystersisters!

I had a hysterectomy at 39. I only had one son, was divorced and pretty much knew I probably wouldn't have more kids but it was still emotional.

Also there is another post that lists some great questions to ask.

In the end I don't regret it at all. Try to keep your ovaries so you won't go through early menopause or have to do hormone treatments.

Good luck.

[GailGoldie]

It sucks u have to think about this. I think there is some great advice from others.

My brother and SIL never thought they wanted kids then about 8 yrs later they realized they did so I think you have a good head on your shoulders knowing things might change. And if u are both ok with adoption that is great. You could also look into an egg retrieval and storage if a bio child is something you feel you may really want then find a surrogate.

Prayers for you as you decide. I hope you can end the pain. Chronic pain is torture.

[eclaires]

Good luck with whatever you decide! I have no advice, but it sounds like it would be the right decision for your quality of life.

This is not near the same level of decision, but I'm having a reduction tomorrow. I have all sorts of weird guilty feelings about it even though it will alleviate my back issues that are a constant source of pain and inconvenience in my daily life. I think it's normal to question things when you're making a choice and it's based on your quality of life/pain instead of a doctor telling you, WE HAVE TO TAKE THIS OUT NOW, kwim? Anyway, I hope that you find some relief soon.

[munkii]

Something to keep in mind is that a hysterectomy is not a guaranteed solution to rid endometriosis. Although it seems like it does work for many (and if you decide to do it, I hope it works for you), I know based on my mom's experience and from my dr's advice that it's not always a cure.

[MrsDL]

May 15, 2012 23:10:51 GMT -5 pixy0stix said:

I'm sorry.

My coworker is young(ish) and had a hysterectomy. I gather it's from a situation similar to yours. She said it was the best decision she ever made. She kept her ovaries, so she still has hormones, and didn't go through early menopause.

I have a coworker who had the same thing last year at 33. She too says it was the best decision she's made and interestingly, she is open to the idea of wanting kids someday. She said she hasn't met the right guy, doesn't want to do the single mom thing, so that future decision will depend on if she does meet somebody and the timing.

She said when she weighed the choice, she decided that she would prefer to explore adoption or serogacy if the time came, rather then live with the pain indefinately just in case the choice to have kids comes into play. I admire her, it couldn't have been an easy decision and I imagine the pain must have been intolerable.

I'm sorry you have to go through this, and I hope you find relief in whatever you decide!

[emilyj]

Thanks everyone, for your kind words and your perspectives - and dirtyred, I wrote down all of your questions, so thank you VERY much for those. I have an appointment scheduled on 6/19 to see my ob-gyn, so I just have to hang in another month until I can get definitive answer/plan set. Until then, I can do more research on my own.

sbp, you're not stepping over your dick at all. My doctor told me 2 years ago that if we wanted kids, we should start trying because she had serious doubts about my fertility. That wasn't going to happen then, it's not happening now, so I know it's something that may not even be possible without help.

Loritab is my friend. But it's not normal or possible to live life on Loritab, you know?

[debatethis]

I would take your OB's "your fertility could be compromised" stance with a grain of salt for a variety of reasons (or, don't let it weigh heavily on your decision), but beyond that I think you're wise to start considering a hysterectomy. If you're still on the fence about biological children, have you thought about having eggs frozen? I know it's not for everyone (and the process is intense) but it may offer a level of comfort if you're having doubts.

I wish you luck and less pain as soon as possible!

[heightsyankee]

You got a lot of great advice and information above. I have nothing else to add except I hope you get relief from the pain soon. Best of luck with everything!