TTC with possible endometriosis

[monkeybumsmum]

I went to get the results of tests I've been having and the doctor very strongly suspects endometriosis. I'm on the waiting list for a laparoscopy, but have been told it's going to be about 6 months.

Having had three miscarriages in the past (have one ds, 2.5) I am now worrying that carrying on ttc is not a good idea - if I do have endo and manage to conceive then am I headed towards another miscarriage? Does it affect the quality of the eggs?

I really don't know much about endo, and have been v busy lately so not much time to Google (although not sure if I should anyway ).
Anyone been in the same boat? Any advice/stories would be appreciated...
Thanks!

Hello, sorry to hear you're having such a tough time. I've also got endo and have ahd fertility issues for many years, but I can't really answer your questions about miscarriages and endo. I'm pretty sure that there isn't an impact on egg quality.

Anyway. here's a bump hoping there's someone else with better advice...

Thanks piprabbit
I think my problem is that I don't really understand exactly what it is, or the impact it has. My dh was asking me all about it, and I realised that at the results appointment I was bombarded with results/new appts etc, but sat there like a lemon not asking the questions I should have done Wish dh had been there!

I hope things start looking up for you soon, it's so frustrating having to wait for sooo long.

I have endo too. A very brief description is that specks of the lining f your womb flush back into your abdomen when you have a period. They settle anywhere in your abdomen (ovaries, behind womb etc). They then re-act to your hormones, so for example when the message goes out to the lining of your womb to tell it to shed, they will bleed as well. This causes scarring and pain and CAN lead to infertility. I must add that it is not a forgone conclusion that women with endo will be infertile. I have had 2 healthy pregnancys and no MC (thank God). I conceived first DS two months after coming off pill and second DS 3rd month we tried.

I had 3 laparoscapies a good few years back and I also had laser treatment which I am sure enabled me to get pregnant. The consultant said I had mild to moderate endo (he said I looked like someone had sprinkled bisto inside me!) The specks of blood were many, but they were very small. The problems start when endo goes unchecked and scarring occurs which leads to adhesions.

You need to ask your consultant or GP to explain it properly to you. As far as I know it has no effect on your egg quality. I have heard that it can make MC more likely but this depends so much on whereabout the specks of womb lining are and how severe.

You deserve to have this condition explained to you properly. Please do not asume that all is lost. It isn't curable but it can be controlled.

Sending a bit hug and hoping this has helped a bit

MBM- its me M2O

Hope you are ok- have lurked on our thread a bit today and noticed your news Must admit i have avoided the conception boards just lately cos have had a lot on and can do without the pressure!!

Have a look at www.endo.org.uk- LOADS of info there and loads of really knowledgable people. I will e-mail you on FB with stuff I know but may have to do it tomorrow.

I had my second laparoscopy 3 weeks ago- had endo lasered and bowel adhesions sorted. Laps really arent that bad- first few days are painful then its plain sailing.

Good news is-our cons says endo has no link to mc.

Hi 'littletortie' So lovely to hear from you - was going to FB you to see how you were doing but seem to have so little time at the mo. That would be great if you have any more info/advice, thanks. Hope you're okay, I didn't realise you were having another lap, sorry! How did it go? I think you have got it pretty badly haven't you? I had a bladder and bowel exam and everything was fine, so Dr said he thinks it's just in ovary/womb area. How much time did you take off work after the lap btw? My doctor said I'd need three weeks off, is that right?
Will have a look at that website too, thanks! Lots of love and see you soon on FB x

Hippychick, thanks so much for the explanation, it has definately to helped to make things a little clearer! Thanks for the hug too! It's great to hear that you have two little boys - it gives me hope! I'm just so desperate for another child, I feel like I'm letting ds down by not being able to give him a sibling
What was your experience of having a laparoscopy - were they all pretty much the same? How long did it take for you to feel better?
Next time I go to my GP I shall ask her to explain it all - the specialist I see is one of these Professors who you only actually see for five minutes, so it's a bit tricky to ask lots of questions (even if I had thought of some )

Anyway, thanks again girls, I shall be going to bed feeling a little lighter tonight

Have endo too.

Would also suggest you look at the www.endo.org.uk website.

I was advised to have two days off work post lap. You won't need three weeks off - who told you that - tsk.

The four classic symptoms of endo are painful periods, deep pain during sex, pelvic pain and subfertility. AFAIK it does not affect egg quality but it can affect the ovaries ("chocolate" cysts or endometriomas can be on the ovaries in some but not all women with endo).

Some GPs are very ignorant when it comes to endometriosis so you can be given duff information; you are better off looking at proper sites like the above to gain a better understanding of it. Educating yourself re endo is a priority here because it can put you in a better position when it comes to making treatment decisions.

No internal scan will detect endo if it is there; the usual way it is diagnosed is via laparoscopy.

So glad we were able to make you feel a bit better monkey. You only need a few days off after laps (defo not 3 weeks!) Even when I had the laser it wasn't that long.

A young girl at work said she is having a scan to see if she has endo. I told her in my day they could only do laps and I assume that they now do it with MRI scans (is that not right then?) How come she says she's having a scan for it?

I am a member of the Nat Endo Soc. I pay a years subscription and get a quarterly newsletter. Thankfully since my children I haven't had much trouble with it. Just some pain on the left side of my groin and down my left leg.

When i had my first lap the consultant came to me when I was still coming round from anasthetic and said, "You have Endometriosis, take this leaflet." And then he buggered off to play golf!!!

Also when I got preg first time my horrid horrid GP at the time told me, "Due to the invasive surgery you've had you are at a greater risk of MC." This totally freaked the newly pregnant me out. He was completely wrong, I was absolutely fine and had no bleeding or pains or anything unusual. You have to get a good GP and consultant who knows what the hell they're talking about.

All the best to you all.
xx

Thanks hippychick What a horrible GP! You must've been really worried.
Re the girl at work, I was under the impression that you can still only diagnose endo with a lap. I'm under the care of a Professor at a university hospital here, so they are up to date with new methods etc - he said you can only see it with a lap, so maybe the girl at work is a bit confused?
Can I ask how long after your lap/s did you get pregnant?
Thanks for all the advice x

I had first lap, then tried hormone treatment which made me go a bit loopy to say the least. Then I had another lap to see if the hormones had worked, which they hadn't.

So I had a third lap with laser. Consultant took ages zapping every little speck he could find (he was a gr8 consultant). He then said to me, "There's a clean sheet there for you. Go on the pill until you're ready to try for a baby." - so that the endo was contolled.

I think it was about 1.5 to 2 years before we decided to try and as I said before I came off the pill, had one period and got pregnant. We were very surprised at the speed. I do understand that the GP I didn't like felt that he should warn me about any additional risks after surgery but he made it sound like it was defo going to happen, it was like he was saying, "don't get too excited about the preg - it wont last." Subsequently I spent the first 12 weeks just waiting for the MC to begin. One of my good friends told me to ignore what he's said and just think positively - send positive thoughts down to the baby and trust that everything would go ok. So I tried to stop worrying and I also changed to a differnt GP who is lovely. (That baby is now a great big strapping 9 yr old.)

Sorry for the long rambling message. It was a very emotional time for me and once I get started I can't stop - haha.

Take care monkey. I'm off to check my 6 year old for nits (he keeps scratching his head!)

Atilla Thanks to you too for your advice - I have all of those four symptoms you mentioned, so maybe my doctor's right. I shall certainly take your advice and learn more about it...
Re taking the three weeks off - at first I thought the midwife who explained it had got her english wrong (she's Flemish) and I just sat there repeating the phrase 'three WEEKS?' in the hope she'd realise she'd said weeks rather than days. She said they will fill me with gas, which will give me discomfort for weeks afterwards apparently I hate being off work, and so shall warn them, but go in sooner if I feel up to it.
I think my GP should be able to help as she did her training in gynaecology. Am not planning on going to see her in the near future, but no doubt will end up there sooner or later, so shall think of some questions to ask her first.
Thanks again

X posted hippychick - have to dash off to put ds to bed, but shall reply properly later - thanks!
(Good luck with the suspected nits )

If you have a lap I can give you a list of questions that you can ask post lap.

Giving you the findings of the lap op in the recovery room is NOT ACCEPTABLE!!. You should be given an appointment a week post op to discuss the findings. I would certainly ask the cons gynae at length about his experience in such cases as this whole subject can be a steep learning curve. Also some gynaes are more interested in endo than others; they are certainly not all as good as each other when it comes to endo.

Please do not worry about the "three weeks" comment the midwife who spoke to you came out with. She was certainly wrong on that score. I had discomfort in the shoulders for about a day post op and after that had subsided I felt much better. BTW I became pg a month after the op.

Hi there monkeybumsmum, another endo lady here.

I have kind of scanned the thread attila always gives fab advice on endo. Regarding pregnancy my consultant said that having Endo meant you were more prone to ectopic pregnancies which I think leads to mc. However it certainly doesn't mean it's not possible or even probably.

Are you in pain at the minute ? If not then its really up to yourself as to wether you want to keep on TTC whilst waiting for your lap.

I've not had a diagnostic lap only one where they ended up doing a lot of excision so not sure how long it would take to recover. One thing I would say is that its not just the physical recovery, if they do find endo then you might need time to get your head round things, so don't rush back to work until you feel good and ready.

Also the www.endo.org.uk website is fab but do be aware if you go on the message boards that when people have endo and it gets sorted out or they aren't in pain, they probably don't feel the need to post, so it does tend to perhaps reflect the worst end of the spectrum in terms of experience and severity.

It's also worth ringing up the hospital occasionally to see if they have had any cancellations so you can be seen sooner.

Good luck.

Hey monkey, thought I would share my experience with you also.

I had a laproscopy done about 5 years ago, was told by the consuultant that he didnt expect to find anything but if he did it would only be a little bit and he would birn it off. I woke up 5 hours later to be told (whilst still half asleep) that there was loads and he didnt have time to burn any off so I would have to go back. I was partly upset but partly glad there was finally a reason for all my symptoms. It only took a few days to recover and was only slightly uncomfortable at worst. A little while after that, whilst I was still waiting for my burning off procedure I met my lovely DP, fast forward 6 weeks and the date of my procedure arrives along with the news that I am pregnant!! I obviously didnt have the op done at that DS is now almost 3! I have however been ttc no. 2 for about 2 years now but have been told its nothing to do with the endo but the fact I have irregular periods and dont ovulate, i am now on my 1st month of Clomid and have everything tightly crossed it works.
I think with regards to ttc it depends where the endo is, because mine is around the womb and cervix it doesnt affect my chances of ttc, whereas if it is around the ovaries tubes I believe it can be a problem. So hopefully after having your laproscopy you will get more answers.

Sorry for rambling and good luck x

Us endo sufferers do tend to do long posts don't we??? Once we get started we can't stop .

Good luck to you little miss. I am also ttc at the moment. My endo never stopped me before (a bit like you) but you still find yourself wondering if it will hinder things -don't you?

Attila seems to be very knowledgable about this subject which is great for monkey.

I also had pain in my shoulders apparantly the air they pump in to your abdomen (which gives them room to move stuff about) rises up - hence the pain in your shoulders. I awoke to think that a fat man was sitting on my shoulders. I drank peppermint cordial which was meant to disperse it.

Love to all
xxx

Thanks HippyChick good luck to you too Im sure we will all get there in the end.

Lol at the fat man on your shoulders! I completely forgot about that but i remember it clearly now, i had a big bloated belly too from all the air took a couple of days to go if i remember correctly. x

The quickest way to get rid of the pressure is to just keep pushing the farts out. How pleasant for the people we live with

Ha Ha I was going to put that HippyChick but thought it was a bit crude lol It is true tho

Sorry, still not had chance to spend more than a couple of minutes on computer so not able to reply properly!! Thanks so much for all the advice though, and hopefully I'll get a bit of time tomorrow to sit and read all info thoroughly!