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Discussion Starter · #1 ·
Hi,

Just looking for a bit of advise. I was told I had grade 2 endo last Wednesday, When the surgeon told me i still wasn't with it because of the antistatic. She showed me pictures of my tubes and womb and said they were all swollen and stuck together this was because of the endo apparently. No other treatment apart from IVF was possible she said it had gone too far and that i have to discuss with my consultant. To be honest i feel like I have been left hanging in thin air with no answers confused upset feel like I'm going mad . Can anyone tell me if surgery would be an option (have any of you had  everything swollen and stuck together). I also have PCOS I don't know if this effects things as well. I have had no other symptoms of Endo no bad period pains or anything and I havven't taken the pill for 1 1/2 years.This may seem a really silly question but after a lap would this prevent you coming on your period?

If the IVF is my only option how long is the waiting list and how much does it cost to go private.

Thanks for your time.
 

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Hiya Laura

I have seperated your post from the other thread as i think more ladies will see this and respond to your message.

I also have PCOS and ENDO, mine is severe, i havent had any probs with having af after having a laparoscopy, but i havent taken the pill so cant say whether or not this would impact or not

Some ladies have no symptoms of endo and some ladies have many unfortunately

I didnt have any probs from the PCOS during my IVF cycle although everyone is different

Regarding the waiting list this can vary from area to area, the best thing to do is to contact your local PCT who can advise on this

Going private and the cost would depend on which clinic you have in mind, perhaps ring around the clinics which your interested in and ask them to send you an information pack

If theres anything else i can help with fel free to ask

Emxx
 

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Discussion Starter · #3 ·
Thanks for replaying to me , im still trying to find my way around the site. Did your IVF work first time?
 

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Hiya Laura

Yes my IVF worked first time, we started last august and my little boy is now a month old

Do come and join us on the yorkshire thread, the link that rachel has left will take you there :)

the girls are all lovely

Em
 

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hi Laura,  :)

i just wanted to let you know that i've also suffered with endo for a long time and up until last year took the pill.

after i had my lapro it didn't affect my period, i just waited and was lucky a month after it came.

having said that i'm due to go in for my third on the 4th of june so i'll let you know if it makes any difference this time.

i havent had any IVF as yet but my endo was pretty severe and i know that the consultant thinks it might be the best option. i had surgery a year ago to remove all the affected stuff and he was happy with the result but unfortunatley i'm still getting some problems. i have found myself that whilst the cons is lovely and tries to help sometimes i also leave feeling unsure as to whats happening and what to expect next. i think that this forum should really help, the support is amazing, and you can find out info or have a good moan without feeling silly.

i'm not sure how long the wait list would be in your area but i was told that where i live its approx 12-18 months.

best of luck, let us know how you get on
^fairydust^


love and  ^hugme^
joxx

 

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Hi

I've replied to your post on the IVF board regards grading of endo....

♥ Minxy ♥ said:
LAURA H said:
Hi,

Can anyone tell me what grade 2 endo is is that worse or better than grade 4?

You guys seem to know what your takling about im really confused with all this?

Thanks for your help
Hi

Grade 2 endo is not as severe as Grade 4.

"Stage One - few endometrial implants, most often in the cul-de-sac in the woman's pelvic area.

Stage Two - mild to moderate levels of endometrial implants affecting one or both ovaries.

Stage Three - moderate levels of endometriosis with implants in several reproductive areas, perhaps in one or both ovaries.

Stage Four - the most severe of the endometriosis stages with widespread endometriosis implants throughout the pelvic area. The more widespread the endometriosis, the more likely fertility problems will be experienced"

"The Stages of Endometriosis Endometriosis can vary in terms of severity. Like other diseases, it is categorized into four stages -- the higher the number, the more severe the endometriosis. Stage I is when your endometriosis is minimal and still very thin and "filmy," hence easier to treat. Stage II is mild endometriosis; the endometriosis is still on the thin side but is situated more deeply into your surrounding tissues. Stage III is moderate endometriosis; here, your endometriosis is denser mixed with some Stage I or Stage II symptoms. Stage IV means severe endometriosis. In this case, the endometriosis is dense and deep, a bad combination. -Copyright © 1999 by M. Sara Rosenthal. From The Gynecological Sourcebook, by arrangement with The NTC/Contemporary Publishing Group, Inc."

Hope that helps
Natasha

[red]This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites[/red]
If you've been diagnosed with grade 2 endometriosis then there is the chance that surgical removal will help you. There is also a window of approx 6-9mths (some say up to 12 months) when chances of conception are improved following a laparoscopy.

I'm afraid I can't help regards PCOS as it's not something I suffer from, but I was diagnosed with stage 4 endo 20 years ago at my first lap and I've had several ops to deal with this. I have managed to conceive 5 times (3 naturally, 2 through IVF) but sadly I've not sustained a pregnancy (1 termination 18yrs ago and more recently since actively ttc, 4 early miscarriages)....but I do have other problems effecting my fertility aside from severe endo....and we don't plan on giving up yet (despite having just had our 6th IVF/FET and being 39!!) ;)

I did conceive 7mths following 1 of my ops for endo and again immediately following a hysteroscopy (look directly inside womb) so I do believe that sometimes it can improve chances, although sadly I've not managed to conceive since my last op in Feb 07, but then I'm older too :-\

How long have you been actively ttc (trying to conceive) ? Have you been referred to a fertility consultant ? I would perhaps write a list of questions and speak to a fertility consultant. As Em has already mentioned, NHS waiting list will vary from area to area, many have specific criteria before you're entitled to funding eg minimum/maximum age, BMI limits, minimum length of time ttc etc so you would need to speak directly with your local PCT (Primary Care Trust)...if you're considering private IVF, then you're also better off checking with your PCT because some will remove you from any NHS waiting list if you've had private IVF. Private IVF can cost anywhere from around £2500 + drugs which can come to approx £1000 + any blood tests. sperm analysis etc (around another £300-500 approx)....so I'd say you're looking at approx £3500-£4000 per cycle of IVF....although some hospitals may be a little less, others more expensive, you'd have to do some research.

The NHS waiting list in our area of London was 2-2 and half years and we've just had our 2nd NHS funded cycle (our area funds 2 cycles, other area may only fund 1 cycle, few fund 3 cycles). We also paid for 2 full IVFs and 2 frozen cycles (using embies left over from 1st IVF) before we started our NHS cycles....luckily our area didn't remove us from waiting list but you do need to double check that having private wouldn't jeopardise NHS funded cycles for you.

Anyway, wishing you lots of luck
Take care
Natasha
 

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Hi Laura

You will get lots of advice and support on this.  I can't help you with waiting lists etc as I live in the Channel Islands so we do not get any funded treatment, everything is private but we pay additional costs for monitoring on the island.

I don't have PCOS but have grade IV Endo and have had for many years.  Just wanted to let you know that I have had surgery on several occasions to remove adhesions and 'unstick' organs (they use a laser to do this and it can be done via lap) but my cons has been very selective about this as he is aware that I am TTC and have fertility issues.  For example, one of my ovaries is currently attached to my bowel and he would not be able to seperate this without considerable trauma so has left this as it is and has been monitoring.

You have already been given some great advice on this thread, I would say that before you make any decisions about IVF etc you should see your con with a list of questions as you need to fully understand what is happening with your body and try to resolve these issues as much as you can before embarking on treatment, although I'm not sure how long you have been TTC?

Wishing you lots of luck and sending  ^reiki^ ^reiki^ ^reiki^

Foxylady xx
 

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Hi again

Just to add to Foxylady's post, there are other procedures, aside from laser that can be used to remove endometriosis. As well as laser, I've also had diathermy which is where they burn off the endo but there is also excision which is where they literally cut away the endo with microscopic tools....excision is far more skilled and not all surgeons are experienced with this but it's often used for deep rooted endo. Endo usually causes adhesions (scar tissue that glues organs together) and this can also be removed as in many cases, it's the adhesions that cause pain and problems, sometimes more so than the actual endo.

As well as having endo cysts of both ovaries and both tubes being sluggish & damaged by endo and adhesions (thankfully nolonger blocked), I've also had both ovaries glued to their relevant tubes and then all adhered to pelvic wall. My bladder and womb were completely stuck together too. I've all these separated on a number of occasions. I've had endo in pod (pouch of douglas) & on bowel......basically a complete mess, primarily because I'd had problems since I started periods at 12 but took until I was 19 to finally be diagnosed with severe (stage 4) endo & adhesions. As I say, despite all this, I have managed to conceive several times so there is always the chance.

You may find the National Endometriosis Society website a help with regards to general questions and concerns about endo.

www.endo.org.uk

There's a thread on there with hints & tips on preparing for before an op (which you've obviously now had) but it also gives some great advise on questions to ask your consultant at follow up appointment so you may find some of it helpful...

http://endoboard.yuku.com/topic/1017/t/LAPAROSCOPY-TIPS-Qu-s-to-ask-Consultant-updated-09-2007.html

Take care
Natasha

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Discussion Starter · #11 ·
Thanks so much for replying all of you. It makes me feel a little better that other women have this problem also. I know this sounds a little sad but it did make me feel less of a normal woman when i was first told this last Wednesday. I though i was just going to have the lap and dye then be given clomofine(is thats what it's called) to make me produce more eggs Because my partners sperm is ok. We have been trying for about a years and half.

just like to say you girls are an inspiration and so helpful im am really glad i found this site.

I have just received my follow up appointment letter it isn't until the 2/7/08, I have rang up to see if i can get a cancellation and they said as it's holidays period it is very unlikely I will see Dr debono before then. I had a good chat with the nurse on the phone she was the lady who scanned me and told me i have what looked like endo cysts. the waiting time in this area is 18 months unfortunately. I asked her about surgery laser treatment and so on she said if they were blocked tubes. (which they were cos the dye wouldn't go up)  it wouldn't matter what surgery i had i would probably have to have ivf. I don't understand how i can have ( a low grade of endo ) but have completely blocked tubes. Both of them as well. I must of had endo since i started my periods at 11 for it to get this bad.

In your opinion would you ask for the consultant to have an other look and see if any of the endo can be taken away?

Even though I have PCOS i still have periods they very from 28 days up to 40. i had the lap on day 33 it was touch and go wether i would come on then i wouldn't be able to have it done. I still haven't come on though i would have thought with them messing down there i would have come on straight away?

I was due back at work today but I am still taking pain killer and haven't drove since before the Lap my stomach is still hurting. How long does it normally take to recover from the lap ? Think they must of been banging about down there ha ha

 

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Unfortunately there's really no way of knowing how long you've had endo, although thankfully yours is only grade 2 so not quite so severe (as per my post above with info on grading).

Both my tubes were blocked but the dye from my first lap 20yrs ago must've helped a little (although didn't spill through) and then when I had an HSG a few months later to determine exactly where the blockages were within my tubes, the force of the dye pushed through the obstructions (old blood & endo).  My tubes have thankfully remained clear ever since but because of the endo/adhesions they are damaged and sluggish.

There are ops that can be performed to clear your tubes but it really would depend entirely on the severity of the blockage, where the obstructions were, what was causing them etc.

I would wait to speak with your consultant and ask all the questions.

As for when you get your period following a lap.....well a lap/dye can delay things and cause your cycles to be a bit irregular for a few months after wards so nothing unusual in the fact yours hasn't shown up yet.  You may also find that the first few bleeds following lap/dye are a little bit more heavy and painful....not always the case but often happens. 

We all recover at different rates so there's really no set time as to when you should be back to normal.  If you've only had diagnostic lap you may find you recover much quicker than someone who's had lots of surgical removal of endo.

All my laps (5 in total) have involved extensive surgery, even my first one wasn't purely diagnostic as was so bad consultant didn't want to leave it and I've been signed off for at least 2 weeks each time, sometimes longer.....but it can take a few months for your body to settle back down afterwards and for you to feel any real benefit.

Take it easy, don't push yourself and if you're still feeling particularly bloated, try drinking peppermint tea as this can really help.....as can taking arnica pills which help heal inside quicker.

Take care
Natasha
 

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Hi Laura

HSG is a hysterosalpingogram.  They push a special fluid through the fallopian tubes and into the uterus and view this on an x-ray.  It allows them to see the size and shape and also determine whether there are any bockages.  As Natasha says, the force of the liquid going through can also sometimes clear blockages.

You won't be put to sleep and although it can be uncomfortable it is not painful and I think it is a really important method of diagnosis if you have been told there are any blockages in your tubes.

Hope this helps.

Foxylady x
 

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Hi Laura,

Welcome! You are in good hands on this board!

Just thought I'd add my tuppence worth although what the other lovely ladies have said is spot on. I have grade 4 endo with severe adhesions and also have it in my bowel. I have had 2 laps - 1 diagnostic and then a further 1 last October which was fairly emergency to drain 2 large endometriomas in my ovaries - my ovaries were swollen so much that they were touching (ouch! - my GP said the back pain I was getting was from constipation!!!!!  ^idiot^).

Anyway - 1 have 1 blocked tube and the other fairly badly damaged. IVF was our only hope and we have been truely blessed that it has worked first time for us too - junior is due in November. My cysts actually refilled during my IVF treatment but are undercontrol at the moment and half the size they were.

Good luck with which ever way you go - IVF is a scary road to go down, but its not the end of the world and can have a truely fantastic outcome.

Take care!

Karen x
 

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Hi Laura

Just been reading this thread and wondering if you have been feeling any better over last few days??? i know that once you have been diagnosed it can be a really confusing time, especially if they have just left you hanging like that. I have suffered with Grade 4 endo for 5 years and I still feel like there is loads of stuff i dont know.

Are you still having pain from your lap? A lot of the time the residual pain comes from all the gas that they pump your stomach up with - i usually get unbrearable wind pain across my shoulder blades after an op. Often this is worse than the actual operation pain itself! I find that peppermint cordial and some hot water (or tea as someone else suggested); if you can take it like little shots, it REALLY helps get rid of some excess wind!

If you ever want to have a chat feel free to message me - i'm new to the site too so havent really figured everything out either yet.

Hope to hear from you sometime :)

Good Luck and lots of love ^reiki^ ^reiki^

stacexxx
 
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