PCOS, Endo, TTC 3 1/2 years... Anyone else????

Hi everyone,

Im looking for a little support.

Im 28. Ive been TTC for 3 1/2 years and have recently found out that I have PCOS and Endometriosis. Im waiting for a lap, im on the QLD public waiting lists for fertility and gyno. My symptoms have been getting worse and worse! Up until last year I would get severe ovulation pain and I would collapse if I sneezed or coughed. Now, I am in agony if I sneeze, cough, laugh too hard, AND when I go to the toilet. It is sooooo gross and I am so fed up. My husband has been amazing, but it is all getting worse and Im so scared of having MORE time off work. Some days I just cant get out of bed :(

Im wondering if anyone else on here has Endo and PCOS? Or can tell me about the public system for lap surgery?

:) Thanks.

Hi SunnyV,

Welcome to BB. Sorry to hear you are having a really difficult time ttc & with your health. I have had a lap surgery but in the private system. I do have PCO (not the insulin resistance) but not endo. Hopefully someone can come and chat about their experience.

Hi sunnyV, I too have PCOS, but no endo. DH and I have been TTC #1 for almost 3 years now. I am starting IUI in a few weeks :)
I'm sure you will find all you need here at BB, the ladies here are very knowledgeable and supportive.

Thanks so much Tasha and Rhi Chi Chi,

It just feels good to even log on to BB! :)
I feel silly saying that, but I have been trying for so long on my own... I dont really know why I havent done this sooner but maybe I didnt want to admit to having a problem? :wall:

Anyway, thanks for the welcome. Was the lap scary? Im looking at that in the next few months. I have seen private gynos, but cant afford the surgery myself (hence the waiting!) I made a mistake I think, I googled the procedure. Ive never been afraid of doctors, etc. But I dont think the googling helped me at all. Silly girl!

Thanks again,
<3 Sunny.

Hi Sunny,

I'm 30 and have been TTC for 2 years. I have PCOS, severe endo and a blocked fallopian tube. So needless to say I need help if I am ever going to fall pregnant.

I have a lap in September last year (in the private system). Despite having private health insurance, it still cost a fortune and left me out of pocket more than 4K. So if you can wait with the public system then financially their are benefits but waiting is also so hard.

In my lap they managed to remove / laser a whole heap of the endd but I still have some on my bowel and in something called the pouch of douglas. My FS who did the surgery couldn't remove it. He said it was high risk and required a specialist as a portion of my bowel may need to be removed to get all of it.

The recovery from the surgery was not too bad. I only took two days off work however I think that was the stupidest thing I've ever done. I was in a riddiculous amount of pain to the point of nausea and almost collapsing. It really took more like two weeks to begin to feel like myself again.

The bloating after surgery is also pretty funny, you look about 5 months pregnant, so loose and comfy clothing is a must.

The surgery is done key hole, so I only had three small cuts. They healed well but are still pretty obvious. I'm hoping they fade with time.

After my lap I then started on Zoladex for my endo. It is a hormoe treatmentthat puts you into menopause (well sort of anyway). They break from AF and pain whilst on it was great, but I had a lot of side effects including headaches, mood swings, weight gain and panic attacks. No nice. Am now off it as we have moved on to IVF.

Had an ICSI cycle in Jan but no ET due to OHSS, had feb off to recover and am hoping to do a FET this month.

Oh and in terms of endo symptoms - one million times better after the surgery. I didn't realise how much pain I was actually in and that it wasn't in fact normal. I still have bowel symptoms around time of AF because of the remaining endo, but for now am jsut trying to put up with that. The surgery to deal with that is pretty major and risky so I'm trying to put it off as long as I can.

In the meantime just hoping and praying for a miracle - a BFP.

Sorry for the long winded response. Not sure if I've answered all your questions but feel free to ask anything else you miight want to know

Jane :)

Oh and in terms of whether it is scary. You are knocked out for it all which is great and the nurses are all very nice.

But what I did find hard was that my DH wasn't allowed to come into the day surgery part of the hospital. I did feel quite anxious once in my gown and waiting to go into theatre. I got a bit teary at times, but they see it all the time and are very nice and supportive. I was a complete mess after the surgery though and broke down when getting all the results from my FS. Again my DH wasn't allowed to be in recovery with me, so it wasn't until they were ready discharge me that I saw him.

Was my first time in hospital so all a little new and overwhelming but the nurses were all really kind.

Hi there Sunny and Jane,

Hoping to give you both some hope. I am 33 now, 30 when diagnosed with PCOS and Endo. I had a laproscopy and hysteroscopy through the private system in Jan 2010. They also found during that procedure that my left fallopian tube was completely blocked. They managed to remove most of the endo and I had ovarian drilling to help with the PCOS. We started IVF in March and were very lucky to have a BFP first time. My DD was born in Dec 2010. When we went to the fs after the lap we were given less than a 1% chance of falling pregnant naturally.

as you can see from my sig, I am pregnant again. Completely naturally this time! And yes, I still have PCOS, Endo and only one functioning tube!! So miracles are possible!!! (with thanks to my naturopath cousin)

I wish you both the best of luck and please remember that there is HOPE!! DH and I were talking the other day about how we were having a deep and meaningful 2 years ago about what we would do if we could never have kids. And here we are, with #2 on the way!

Good luck girls. I look forward to seeing the pregnancy announcements!!!

Glenny C and Jane,
Thank you so much for sharing your stories. They both really helped me alot. :)

Jane, thanks for the tips for the lap. The nurses at the hospital were telling my husband that he had the 'day off, just to drop me and come back later'... I didnt want that, we kept telling them that DH would hang around and I couldnt understand why they were pushing that so much until now. It sucks that you cant have partners wait with you! I guess I understand that it would be alot busier, but it all sounds so scary. And, what if I forget something that the FS tells me after surgery? I was counting on DH doing the listening part LOL!

Glenny C, your story helped me too. And how amazing is it that you got pregnant straight away? And then naturally again? Im so happy for you.

Im still waiting to hear my surgery date, but I did get notifcation for a FS hospital appoinment in 2 weeks, so I am really happy! Maybe I can get all fixed up and healthy by the end of this year... maybe maybe maybe I could be preggers!! :pray: Love and hope to you Jane, and so much happiness to you Glenny C. Thanks for helping me.
Sunny xx

Hi Sunny,

Glad to be of some help.

Also, I had a follow up appointment about a fortnight after the procedure where FS went through all the results again. I'm sure that will happen for you too, so don't worry about forgetting stuff you're told in recovery. You get a recap later and Dh can be present for that one too. :)

Really hope it all goes well for you and you can have that much longed for baby.

I've been hanging out in the LLTC and Assisted Conception Thread Feb-Mar thread. Great bunch of ladies there who I have found remarkably supportive. Feel free to come join us anytime.

Best wishes sweet.

Sunny, I didn't see my fs in recovery. I didn't even talk to him until he called with results the next day. I was quite spaced out so wouldn't have been much good him seeing me anyway.

Hi Sunny,

I have stage III endo, but not PCOS. We were TTC over 3 years before I had my lap. In that time we did several unsuccessful IUI and IVF.

The lap made a world of difference. We did IVF#5 2 months after the lap and it was the first one that worked!

Like glenny_c, we went on to get a BFP naturally after DD's birth, but unfortunately the baby had chromosomal issues and didn't survive. However, I am hopeful that we will get another BFP without assistance soon, now that we are TTC again.

The lap is both easy and scary. It's scary because it is a surgery and there are risks just like any other surgery. Someone I went to high school with had a lap for endo go very wrong, so I went into mine knowing that the risks were very real, but, for me, the potential benefits outweighed the risks. It's easy because you're under general anaesthetic and the recovery is usually fairly easy. I actually stayed overnight in hospital because my lap was late in the afternoon and they gave me morphine in recovery so I was loopy as anything most of the night. He he, I remember being fed (by the nurse) jelly for dinner, somewhere around 1am because that was when I woke up... ;)

My FS estimated 2-3 days for recovery, but speaking to a lot of ladies online I learned that 7-10 days is common. I needed 8 days to recover from mine. I was fine moving around the house and was self-sufficient, but sitting upright at a desk was too painful for me to be at work.

If you're interested, I have a list of recovery tips collated on my blog. There's a link on the right-hand side of the blog called "laparoscopy checklist". ;) I found it very useful when preparing for my lap.

Thanks Juniper, Im loading your blog now to have a sticky beak :)

That is interesting about the recovery time, Im a teacher and on my feet ALL DAY, so Ive been nervous about how long it may take to recover. The nrses have suggested 5 days but I doubt I will be doing the hokey pokey too easily!

SO I guess now im planning the waiting game. I feel like all I do is wait! Its ok though, I think a few ladies have already said it on this page but I think I will feel better once I am booked for surgery (still waiting for my letter from the public system) and I will have made a step forward.

Im going to head over to the LLTC threads now.
Thanks so much guys.

xx Sunny.

firstly welcome

i have PCOS and i was on fertility tablets these did nothing so i demanded that my FS send me for a laparoscopy, so he decided to send me for that, ovarian drilling, a hysteroscopy and a dye test, whilst in their operating they also found endometriosis.(which they were able to scrape and clean up during surgery)

I am lucky int eh sense that i dotn get much pain when i ovulate but then again he has just sent me for tests to see if i even ovulate...

After my surgery i took 2 weeks off but i was able to move around after 3 days...just those first day or 2 is the hardest because i could not even get out of bed without my husbands help...luckily i did not have much pain but my belly was swollen to the point where i looked 9 months pregnant..

i was put down as a category 3 non urgent so was told it would be about 3 months.. i had pain one day and felt sick so i went in they checked me over and i was fine, on the way out i asked if there was a surgery date yet, there was not but because of my persistance she rang me the next dayadn said there was a cancellation and because i had just asked she remembered my name so offered it to me first i was in there 7 weeks after referal not 12..so keep checking on it ....

I am now 8ish weeks post surgery, and on metofrmin 850mg 3 times a day, and chlomid once a day during periods. so fingers crossed i get tehre soon....

Keep your chin up i try but i know its hard but inthe mesantime BB is here to use and vent