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Looking for someone in my shoes... Looking for someone in my shoes...

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Unread 04-17-2002, 07:27 PM
Looking for someone in my shoes...

Dear Liz,
I think it is so normal for you to be scared and wondering if your pain really is bad enough to have a hyst. I was the same way. Last June I had a laparoscopic myomectomy to have two large fibroids removed. During surgery my gyn found stage 4 endo. I read several books, spent lots of time here at hystersisters, agonized over what to do. I got a couple of other opinions, and finally decided that I really did need to get my life back. There are no guarantees that the endo won't come back, so I was very worried about the outcome.

At 5 months post op, I feel like I am living a miracle. The pain is gone. After being told I had irritable bowel syndrome about 16 years ago, I now know that it was the endo all along. Don't get me wrong, the first couple of weeks after surgery were not easy. But a couple of weeks is nothing in the big picture of things. I am just so thrilled to have that belly pain gone.

Sometimes I think that we ladies get so used to having pain, we don't realize just what an effect it has on our lives and our families. I can tell you, life is joyful when you aren't in pain! Yes, I still get tired. I'm only taking low dose estrogen right now and spent the first 12 weeks post op with no estrogen. However, any menopausal symptoms have been a breeze compared to what I was living with before.

This is a tough decision to make. And there are no guarantees. But don't let your fear keep you from the possibility of being able to live your life more fully. Keep reading and posting. We'll be here for you every step of the way. Best of luck, whatever you decide.

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Unread 04-18-2002, 01:58 PM
made a pro/con list...IT HELPED!

Sherl aka Reina

I made a list like you suggested...it helps. I have three big pros: no more periods , no more pain and no more IBS!

My cons are: I am worried about personality changes, HRT, losing my libido, and how hard this next year will be. Does this sound familiar? These things make me cry every time I think about them.

I suppose, the HRT & loss of libido can be treated easily...I shouldn't be worried about them as much as everything else. I talked to the doctor about this, yesterday and he told me what my options are.

I guess I am just scared spitless. It really helps to know that there are others out there that are in my position; waiting, praying, and crying. My prayers go out to all of you and my thankfulness that I found you, too!
Unread 04-18-2002, 10:15 PM
Looking for someone in my shoes...

Hi Liz--

Did your gyn tell you that hyst was your only option? or did s/he discuss other procedures? There are a wide range of tx for endo and usually hyst is a last resort, after all else fails.

Like JDJ, I was dx with Stage 4 endo. I had laproscopic surgery that lasered away the "spider webs" and endo implants, leaving all of the parts intack. That was over twelve years ago and I've been symptom-free since. (I'm now dealing with an ovarian dermoid cyst...)

Since you sound unconvinced that hyst is THE choice for you, you may want to research the other options first. After all, you can always try other tx first and then hyst., if they all don't work. But you can't undo a hyst.

Best wishes, what ever you decide.

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Unread 04-18-2002, 10:52 PM
Looking for someone in my shoes...

I'm a newby and am learning alot. Diagnosed with endo. and a 1/2" fibroid on lower uterus. I don't need to tell you all about the pain. Got so fed up with it after many, many years of thinking I just had to live with it. My gyn. wants to start me on low dose bcp (don't need it for bc--dh had a vasectomy years ago and we have 2 children), but of course I have to jump thru some hoops with my ins. They don't like paying for bcp.
Anyway... my gyn. said that if I wanted to have a lap. done and if endo. was indeed found that she'd want me to agree beforehand to immediately have a hyst. She doesn't believe in removing endo. with lap. because they ususally come right back. Plus she doesn't like to perform more surgeries than needed, no matter how minor (i.e. lap.). So...I'll give the bcp a spin and hope I don't get the awful migraines I had when on them before, years ago. Does my gyn. advice sound okay to you all or should I talk to another gyn.
I sure appreciate all you gals out there. Thanks for everything.
Unread 04-18-2002, 11:59 PM
Looking for someone in my shoes...

Hi, Leone! Welcome to HysterSisters--best site on the Web! Since you are still researching and not convinced a hyst is what you need yet, you may want to post over in "Options and Alternatives" to see what the gals over there think about trying BCP or other hormones for your endo. https://www.hystersisters.com/vb2/for...p?s=&forumid=4 Also you can go up to the top of the page to "search" and read past threads about endo or fibroids or BCP or Lupron or whatever you're interested in. Feel free to ask questions and we'll try to answer them. s and best wishes to you!
Unread 04-19-2002, 08:03 AM
Looking for someone in my shoes...

Liz << The pain pills cause constipation and make the pain worse! >>

I've been there, done that. I was taking low-dose Oxycontin for months for fms pain and while it helped, I could only take it once a day (not twice as prescribed) otherwise it would cause horrible constipation. I was then switched to Kadian, a 24-hour time release morphine, and that made things even worse. 12 hours on, 12 hours off seems to be the maximum amount of morphine my body can take.

Something that *did* help me and is available otc is a stool softener called Colace. A friend who is a nurse at a hospice recommended it and it did help. You need to start taking it a few days before you anticipate the problems though -- it takes two or three days to work. I now find that if I can plan when I'll need Oxy (or similar), I just start to take the Colace ahead of time (directions are on the bottle) and it makes everything go more <ahem> smoothly!
Unread 04-19-2002, 12:08 PM
Colace and IBS

The colace sounds good. I am taking a fiber pill that cuts down on the IBS pain between periods but doesn't help during them or while my covered-over ovaries are trying to ovulate. I take it once a day and a high fiber breakfast in the morning.

Last night was unbearable! I ended up feeling horrible after a session in the bathroom. Things were too loose, if you get my drift. OUCH! Will the colace make that worse or help the goose not be so loose?

I recently read that endo can make the IBS worse. I am sooooooo sick of bowel pain during my periods and ovulation. I am tired of my kids thinking, "Mommy is sick, again. That's just the way she is." I am also tired of this getting in the way with my relationship with my dh. I'm either too sore, too sick to my stomach or too tired.
Unread 04-19-2002, 12:32 PM
Looking for someone in my shoes...


Did your gyn tell you that hyst was your only option? or did s/he discuss other procedures? There are a wide range of tx for endo and usually hyst is a last resort, after all else fails.

My gyn told me that I could treat it medically but it would come back. He also told me that since I was done having kids (my dh had a vasectomy a year ago), this was my best option.

I have been running around with with those options for a week, now. This has been really hard! I made a list of pros and cons, suggested above. My dh has contributed to the list of pros and cons too!

Cons for treating it medically are re-doing the lap everytime the pain shows up and risking more adhesions and more surgery. My bowels are literally glued together along with everything else. I don't want this anymore! I have been living with bowel pain associated with my period since I started having periods 21 years ago. I am sick of it!

Pros are, I get to keep my organs!

Pros for the hyst include no more pain, IBS, periods , better sex life , and no more hormone headaches!

Cons include worrying about personality changes, HRT (which is no worse than taking bcp which doesn't work, anyway!), losing my libido (which is already at an all-time low point now and can be fixed with HRT), and how hard the next year will be adjusting to all the changes my body will make. (Did I leave anything out?)

Believe me, I have been thinking hard and praying hard about this decision! Your thoughts and prayers and hugs from this site have meant a lot to me, too! Thanks for thinking of me!
Unread 04-19-2002, 01:50 PM
Looking for someone in my shoes...

The bad part about endo is that there are no guarantees. Some ladies have no recurrance of the endo after a hyst, others do. So if anyone guarantees that your endo will be gone after a hyst, beware! Both my surgeons told me this, even though they recommended a hyst as my best option for a "cure."

That said, after weighing my options and agonizing over what to do, I had a TAH/BSO about 5 months ago. I am one of the lucky ones. I had no complications at all from surgery, went back to work at about 7 weeks post op, and so far (fingers crossed) I'm still pain free! It feels like a miracle to have all that belly pain and associated intestinal problems gone. I keep praying this will last.

As some have pointed out, there are other options for treating endo. Again, there are no guarantees with any of these treatments, including laparoscopic surgery to remove the endo only. Some people do very well, others have a recurrance fairly soon. There's just no way to predict what your outcome will be.

Keep reading, posting, get second opinions and be as sure as you can that a hyst is the best decision for you. In my case, I feel like I'm living a miracle ... I know I am lucky. I wish all of you a similar outcome, if and when you have hysts.

Unread 04-19-2002, 02:31 PM
Looking for someone in my shoes...

Hmmm, let me see, I would turn in to the :dragon: lady right before my period and now I am a !! So much for my personality changes. DH likes me more. AS for my libido...it's better now. The changes in my body seem to be all good. My thyroid medication was cut in half because I got rid of all the crud and it started working better. All kidding aside, this is a tuff decision, harder for some then others. Only you will know when your ready. I had so much junk in me my right urater was only allowing a trickle of urine to get through. I was damaging my other organs. You don't want to do that. I look back at all my worries and really, "the waiting really is the hardest part." ( I know I've heard that some place before ) keep in touch, ok? Karlene

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