looking for support for laparoscopy and possible tube removal

[mamaro]

Hello to all. I used to post much more in the past, but for a variety of reasons I have needed to take a long break. So, now that I am back I'd like to say hello to everyone and re-introduce myself as I am missing y'all and in need of a bit of the wonderful support here.
I am the 33 yr old mother to an almost four year old daughter. I have PCOS and conceived my daughter five years ago after six months on Clomid and immediately after an HSG test. I always jokingly told people that it was the HSG (I always called it my "roto router" test!) that got me pregnant, but I never realized how accurate that probably was. Because I got pregnant so quickly after the HSG, I never really spoke to that RE about the results, and he never informed me that he suspected I had a condition that was nearly completely blocking my tubes and would only get worse over time. Well, now that it's five years later and I still had not conceived again, despite acupuncture, weight loss and medication, I decided I should probably see another RE (my insurance no longer covers me seeing the other ones) and i wanted to have a copy of that old HSG test with me. Boy, was I shocked when I read it and then had my new RE confirm that I was understanding it correctly. He was immediately concerned that if what that Doctor had diagnosed five years ago was accurate, that I would be much worse off being that they know that it is a progressive condition. He immediately ordered another HSG. I had it last Monday and unfortunately the news was not good at all. I was completely blocked and now we are getting ready for a laparoscopy to ascertain just what stage we are at. To add to an already complicated situation, I will need to make the decision whether or not to give my RE permission to remove my tubes during the laparoscopy. With the condition that they suspect that I have, leaving fallopian tubes in place can decrease your IVF success rate by 50% or more, and since he feels that it would be nearly impossible for me to get pregnant with the state my tubes are in, he seems pretty matter of fact about removing them.
Well, of course he can be matter of fact since they are not a part of HIS BODY!!! Anyway, for now I think dh and i have decided to take a more conservative approach and have them just do their best with trying to open the tubes during laparoscopy, and then letting us try on our own with Clomid. They have warned us that even if they are successful in opening the tubes that I will be at a much higher rate for an ectopic pregnancy, so they will monitor things pretty carefully.
So, now that you all know more about me than you ever wanted to know, my basic question is, does this sound similar to anyone else's situation out there? Did anyone have a successful laparoscopy to open tubes and conceive and not have an ectopic pregnancy? I would love to hear from anyone having any of these similar experiences. thanks so much and baby blessings to all of you.

[stafl]

Sorry noone has replied! I haven't had the exact same situation, but I have gone through two laps. Luckily, the endo left my tubes alone, but I was dx with severe Stage IV, due to the sheer amount of endo and adhesions found inside me.

I would highly suggest visiting Women's Surgery Group to answer any questions you might have that your doc didn't address. If you go to the endo section, click on FAQs, and you will find a great list of questions to ask your doctor before the lap.

If you do have endo, which by the sounds of your post, I am just assuming, clomid is thought to make it worse, by the way.

Last, but not least, don't ever be afraid of seeking a second (or third or fourth) opinion if you don't like the options your doctor gives you.

Feel free to ask me anything at all. (((HUGS)))

[mamaro]

Wow, thank you so much for your response. Once I reply here I am heading right over to the site you mentioned.
Right now they are unsure if they are looking at endo or possibly something else. I guess that the idea is that the lap will hopefully give us a lot more information. Do you mind me asking if your lap was for conception issues or sheer health necessity? Anything I should expect or be prepared for after the procedure? I sure would appreciate hearing anything else you're up to sharing.
I really appreciated your response. I was starting to feel like a pariah and wondering if I should just delete my post!! Thanks for saving me from my overactive insecurities.

[stafl]

There's a link to my website below this post (I think it says www on the button, or something similar). Used to be in my sig, but they changed the rules... My endo story is there if you want to read it.
Anyway, I had the lap(s) due to extreme pain. I was not ttc at the time. I did get pregnant about a year after my 2nd lap, after trying for 8 months (or nine cycles, however you want to look at it).

Let me get together some lap tips a friend of mine on another list has, and post them here for you.
That website has all the technical info you'd ever want to know and then some! That's my doc's website, by the way - I think he's the absolute best doc in the whole world!

Expect your belly to be bloated and painful right afterwards - wear a loose dress because any waistband will be too painful.

Bring a small pillow to hold against your belly afterwards, especially for the ride home - it really really helps.

Expect the gas to escape very slowly, and your shoulders will hurt because it tends to rise. Kind of hard to explain, but you'll know it when it happens to you.

Make sure to have lots of non-binding munchy type food around, like grapes and such. You won't feel like eating much, but you definitely don't want to eat anything that could possibly give you constipation! Apples, bananas, rice, carrots, cheese, etc., are all binding and you want to avoid them.

Tuli, if you are reading this (she just recently had a lap herself and I know she posts here from time to time), do you have anything to add?

[OceanMomma]

I would have replied earlier myself but I didn't want to put you off. Well not really. I had badly blocked tubes & they tried to fix them & failed. They removed one & left one behind. I ended up doing IVF as public funding became available. I had lots of negative pregnancy tests, plus one ectopic & one miscarriage from the resulting embryos. We then ended up paying for another cycle. I have dd who is now 2 & am currently 4 1/2 months pg with the other embryo. So if you do end up having to have your tubes removed, there is still a whole heap of hope. In fact, since I lost my last tube, every subsequent IVF cycle I have had has worked.

My tip for after the lap is a hot water bottle for your shoulders as that was where I found it hurt the most.

Best of luck

[mamaro]

I thank both of you for taking the time to respond.
OceanMomma, please don't worry about putting me off. We are sort of at the critical hour in terms of deciding whether to give our doc permission to just go ahead and remove one or both tubes if they meet certain criteria, and every bit of information helps. He's warned us about the greatly increased risk of ectopic pregnancies and has been very honest and realistic about what we will be facing.
For the longest time when I thought my infertility was only related to my PCOS, I never felt alone. I knew hundreds of women with PCOS, and you seem to hear about it more and more these days. Now that I am experiencing this whole "tubal factor infertility," I have to admit, I have felt very alone, as if I must be the only one dealing with this, even though I know intellectually that simply can't be true. So, it really means a lot to me for you to share your story.
On a positive note, we had an amazing 45 minute meeting with our RE yesterday to answer all of our questions. He was open, very honest and very kind. I asked him questions from the Women's Surgery link and I felt he answered comfortably and honestly. He does about 210 laps per year and we discussed his rate of switching from a laparoscopy to a laparotomy and I was comfortable with both his explanations and the figures he gave. Still, the decision has to be ours about the tubal removal and I am still struggling with the feelings of handing over that much control to someone else, it really terrifies me. It is clear, though, from our RE's perspective that if he finds what he expects to find, that we will never get pregnant and IVF would be our only route, in which case it would be advantageous to have the tubes gone.

OceanMomma, if you don't mind me asking, did you have a second lap to remove your one remaining tube? Did your ectopic pregnancy and miscarriage occur after your first lap and were they IVF cycles? They are fairly sure that I have what's called a hydrosalpinx condition. If you are comfortable sharing I'd love to know if you experienced a similar diagnosis, but please don't feel any pressure to share if you're not comfortable with that. I really appreciate all of your support and the hope that you have given me. Suffice it to say that this has really thrown me for a loop and I'm stumbling my way through as I try to make these really important decisions. Thanks again ladies, and please keep posting if you can.

[OceanMomma]

I'm sorry I wasn't clearer. I was recovering from the pro-lifers *thinking* ectopic pg are abortions & fertitily treatments un natural & abortificant so I was being discreet.

I actually had undiagnosed PID. I don't have PCOS or anything like that. I had a lap & they just looked & said my tubes were beyond repair. Changed their minds 6 months later & operated to fix them. Not with a laparosopy tho'. They removed one & bodged the other & told me I had a 20% chance of getting pg naturally but very high chance of it being ectopic. I was devastated they'd even removed a tube, but knowing what I know now I wish they'd just taken them both out.

About 8 months later. No pg btw, we had some change in govt funding for the IVF waiting list & we got a free cycle. I got lots of embryos - most of which they froze. I had lots of failed replacements. Until I had the ectopic. They operated on that laproscopically as it had ruptured & there was no point trying to save the tube. From the docs scribbled notes I read afterwards, my fixed tube had closed over at the ovary end which meant I was probably having hydrosalpingix. Hence all the failed repl;acements. I had one frozen embryo left which worked but that was the one I miscarried. I found with it being a govt funded cycle, they didn't tell you much & just punted the #s thru. After all a 10% chance of getting a live baby at the end of it is better than a zero chance.

Dh sold his harley to pay for the next lot & they were far nicer & far more informative. However, I was far more educated & informed then myself. We only got 4 eggs this time,4 fertilised. They replaced 2 & we got Saffron. The other 2 got forzen. One surivived thawing completely & we got the current baby. I am 20 weeks pg today.

I s'pose the moral of my story is. Hard as it will be. If IVF is really your only option or you have a very low chance of getting pg naturally & a high chance of an ectopic, let them remove your tubes. That is if you really want to give IVF a go. Women with no tubes have much higher sucess rates with IVF & ectopic pregnancies are probably one of the more traumatic things that can happen to you.

Hope this helps. Feel free to PM me if you would like.