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Endo has got worse - what next?

9 replies

Moomin · 07/12/2004 13:49

have been ttc#2 for 2 years come January. Have had all the usual tests and we were one of the 'unexplained infertility' couples.
I had a lap&dye in June and my consultant said he saw some scarring consistent with endometriosis which was causing my bowel to be stuck to theback of my uterus. However, he said he didn't think it was very bad and shouldn't stop us conceiving. He actually said he'd deal with it after we'd had the next baby.
The next month i went on clomid for 2 months. Developed some pain with it and after scanning me, he saw that i'd bled into one of the follicles that the last egg had been released from. He told me not to take the clomid for a while as it could be contributing to me developing these cyst-type things.
Dh and I decided that we'd actually be better off having a break from ttc as the stress was probably what was stopping us conceiving. However, after a short honeymoon period when I felt very relieved not to be thinking about it too much i was devastated when my period came!!
I then started getting pains again after this period and told my consultant who asked me to come in for a scan today. He said he can see another cyst and it is indicative of those caused by endo, and that the endo seems to be worse. He now considers it to be a factor in us not conceiving Sad.
I've now got to go back after my next period to see if anything is left of the cyst when the bleeding has stopped. He also said the next lot of options could be tricky. He mentioned an op but said it was more serious than a lap&dye; or an alternative of stopping my periods for 6 months to see if it clears...? Don't like the sound of this at all...
I feel very despondant. I thought if we relaxed and hoped for the best we really could do it but I'm getting seriously scared that it won't happen for us. What treatment have other people with endo had? Has it been successful when ttc afterwards?

OP posts:
RudyDudy · 07/12/2004 16:17

Hi Moomin - sorry to hear your tale Sad I was diagnosed with endo nearly 3 years ago. It was diagnosed with a lap and at the same time they lasered it away. Afterwards I still got / get some pains which may be scar tissue or may be the endo come back. After the lap I got pg with DS within 6 months. I'm now ttc #2 and really hoping that I won't need another lap. I was 'lucky' in that the endo was only on one side, though having said that ironically they reckon that was the side I got pg on last time. Weird, eh?

Personally I would be in favour of having a lap as at least once they've been in they can know for definite what is happening. What is the op he mentioned?

Good luck to you...

HellKat · 07/12/2004 16:25

So sorry to hear that Moomin. I got diagnosed with Endo (officially) 6 yrs ago but they suspected I'd had it since not long after I started periods. Both my mum and nan had it (they now agree it can be hereditory). I've had laps 2x. The lazoring helped briefly but after having ds#2, it's worse than before (flooding, pains etc). It's weird that the one thing that heals endo, albeit briefly, is pregnancy, yet it's so much harder to conceive when you have it.
Fingers crossed for you

MeerkatsUnite · 07/12/2004 19:00

Hi Moomin,

I feel for you a great deal having read your message.

I feel bloody annoyed with your cons. to be honest. I am wondering also what op he is proposing (my guess is a laparotomy; if it is this I will give you more details). The other treatment he is considering is drug treatment, no doubt something like Danazol or zoladex. I would also say that drug treatment like these will not touch adhesions once they are formed. The only way to remove adhesions is by surgical methods.

IMO you should never have been termed "unexplained". I can only assume that a lap was carried out after they had given you this supposed diagnosis of "unexplained". Infact it is no diagnosis at all; all this means is that they failed to find out what what wrong to that point in time.

I would suggest you contact the National Endometriosis Society (their website address is www.endo.org.uk) and perhaps also post this same question on there. There is also a helpline; I would suggest also you call them and have a chat.

You may also want to seek a second opinion from a gynae consultant who has a keen interest/specialty in endo. They do exist; you have to search them out though.

I had diathermy treatment for my endometriosis which made things far better foe me in terms of having far less pain than previously. I've had endo ever since I started menstruating at 14.

I wish you thevery best of luck. Do seriously consider speaking to the NES (and also reading their publication Endometriosis and Fibroids). The more knowledge you have re this the better off you will be in terms of making treatment decisions and asking questions of your consultant.

Best of luck

MeerkatsUniteForLifeNotJustForChristmas

Moomin · 07/12/2004 19:58

Thanks everyone for your posts so far. I'm reluctant to change my consultant for a number of reasons. One is that i have experience of a number of them at our local hospital through my antenatal care (i was in hosp for a long time before having dd) plus dh is a theatre nurse and works with a good many of them. Our consultant is someone who he very much respects and is well thought of generally. He has also done us some 'favours' because of working with dh... i don't want it to sound like we get specialist treatment, but he's always very quick to see me at short notice if i have a problem and i'm treated very well at the hosp.
anyway - as is said before i had a lap&dye in june as an exploratory thing which is when he 1st saw the endo. He only saw it in my ovary today though, and i have had plenty of scans in the last few months so i guess that means it's 'new'.
I'm not sure what the op is. i did ask if it was the one where the endo is 'zapped' off but he laughed and said if only it were that simple - so i don't really understand what will happen. He said we can discuss all the options in detail when i go for the next scan in January, as dh will be with me then as well. I'm really not keen on the drugs-based treatment that you talk about, meerkats.
i'm feeling very helpless and out of control at the moment. everything about us ttc has put hurdles up in front of us. I'm scared i'm getting to be one of those women who can't even be happy for her friends when they get pg. i can't bear to go on the ttc boards anymore because i know they'll all get pg and leave me behind in the end. i feel mad and selfish Sad

OP posts:
Moomin · 07/12/2004 20:02

sorry 1st bit didn't make sense - meant to say i've had experience of a number of the consultants at hosp and my one is definitely the best.

OP posts:
xmashampermunker · 07/12/2004 20:48

Hi hun

I posted the other day about endometriosis on health - I have stage 4 endometriosis and it's the most painful thing I know.

I've had one diagnostic laparoscopy and two treatment laseroscopies. The first was in 1999, the second in 2000, the third in 2002 and I had DS in April 2004 after 11 months ttc - I fell pg on my first cycle of clomid.

I also tri-cycled on the pill, which was OK. Periods were awful (even worse than off the pill), but only had four a year. But then I started to get cramp in my legs and migraines, so I came off the pill. Plus wanting to get pg and taking the pill aren't really compatible!

After my first laparoscopy in 1999, I took Provera, which turned me into a raging psycopath (I don't do too well with medicines...!) - I'd quite cheerfully have murdered people, but I was in too much pain from the operation (thank goodness - my only concern was I'd not have the strength to bury them in the back garden - scary scary stuff looking back on it now!).

I was also offered Zoladex, which is possibly the drug you've been told about that will stop your periods for six months. It puts your body into a reversible menopause. For some people it works brilliantly, but I knew that I was unlikely to be one of those given problems I'd had with meds in the past, so I decided not to take it. Plus my consultant lied when he told me there were 'no side-effects' - actually took my hand and promised me this(!) I'd done a lot of reading about my various options so I knew this was something I didn't want to try.

Before my second laparoscopy, my consultant (different man - got referred after the lies the first one told me!) said he hoped to give me five years clear of the disease. After the laparoscopy, he said he hoped he'd given me two years - I'd not been vocal enough about how painful it was and he'd found considerably more endometriosis and adhesions than he'd imagined would be there. I tend to put a brave face on things and make jokes when I'm in pain, which makes people think there's not much wrong! Stupid me!

So one month shy of two years later, I had my third operation - a lap and dye. He removed all the endo he could (there was a lot - I'm very good at growing it...) and found my tubes were clear.

So as soon as I'd recovered from the operation, we started ttc. Nine months later, I was rushed to hospital after an ovarian cyst burst (excrutiating agony - worse than standing on an upturned plug in bare feet Grin - see what I mean about jokes...?!). I was scanned and found to have polycystic ovarian syndrome - hence my erratic cycle. I went back to my consultant and he said that I should try clomid and have follicle tracking to make sure I didn't produce 100 eggs.

On the first cycle, I produced one big fat egg and the lady doing the scan wasn't too hopeful of our chances of conceiving. I also had really bad ov pain - nearly put me off ttc that month! However, I'm very glad we did, because 9 months later, our beautiful DS was born.

He's now 8 months old and I've had two periods since having him (despite breastfeeding still) - the first was OK, the second was very painful.

So even with stage 4 endometriosis, bad adhesions and pcos, it is still possible to have a baby. I realise I'm one of the lucky ones and I hope it gives you hope that all the treatment and operations are worth it.

My surgeon was Mr Robert Richardson - he works from Chelsea & Westminster and (I think) Guildford and is superb.

HTH a bit - lots of babydust to you hun xxxxxx

kittyb · 07/12/2004 21:24

Havent read whole thread so sorry if repeating anything. XmasHM, you might want to think about going for #2 quickly before your cycle and the endo establish themselves again. I did a four week no wheat-no dairy and my period really improved. Usually I start to feel really stiff across whole lower back as if losing flexibility (feel like an old woman) and my back and abdomen start to ache from about day 20 on, but with this diet I didnt get that. First two days of proper bleeding still sore but much less "chopped liver" (sorry tmi I know)and had only a day or two of old blood before proper bleeding, instead of about five. So the no wheat-no dairy is a real pain, but I'm sticking to it because of the improvement in my periods. Hope this helps.

xmashampermunker · 07/12/2004 22:06

Thanks KB - yes, think we'll try for number 2 sooner rather than later - would hate to wait and find out it was impossible, then wonder what if forever.

Know exactly what you mean about the old lady lower back thing too! No wheat no dairy sounds like it might be a good idea - not sure if that's compatible with breastfeeding though?

kittyb · 08/12/2004 18:04

You're right - best just to get the fuel on board when and where you can!

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