[Martha Moo]

Hi Ladies

New thread for chatting for 2011

If you have any thoughts for things you think would be helpful to see on the board feel free to let me know

Also, Endo Live Chats are back, this month the chat will be on 19th January and thereafter they will be the last wednesday of the month

Happy Chatting 

Em

 

[fiona881]

I have been suffering with AF since they first started, I was told to go away and get on with it, put on the pill after 4 years then finally got diagnosed once we started TTC and asked for help.

We were going to try another round of IVF but we don't think it is the right move for us now, neither of think we can cope with the emotional and physical stress of it.

We had a good long chat yesterday about it all and Darren has admitted there is no point in me trying to cope with it all now.
He hates seeing me in pain and know there is nothing he can do to help me.
The pain has got beyond the DHC's now my step is Tramadol and I don't tolerate them at all.

 

[English Rose]

Hi Holly – had a little panic yesterday thinking AF was about to arrive 6 days early but only a little spotting.  Although I’d love to be pregnant I’m not aiming high - I’ll be grateful if my periods become regular again.

Hi Fiona – I’m wondering if we’re being a bit too polite calling her AF as I have great affection for all my Aunts.  Maybe we should refer to her as ‘the OC’, the old cow, feels more apt! 

Hi Alisoula – It’s gutting when you see that grey mass.  I too was rushed into hospital after passing out a couple of times, fortunately they took out my perfectly healthy appendix.  I say fortunately because if the surgeon had seen that it was the cyst on my ovary I would be without now.  A girl in a bed opposite me in her v. early 20s had her ovary removed
I also went to Bourne a couple of times but given my age and medical history I felt I had a better chance at Oxford which had an agreement with EOESCG, unfortunately that one failed too   I’m not sure if Bourne offer the immunology test but I do know Oxford does not which is why I’m off to CARE @ Nottingham to see Dr George

Hi MrsMaguire - I too was told that I needed a hysterectomy at 26.  I was told it would have to be a full hysterectomy, womb and ovaries – For me it felt a little too extreme so I didn't take them up on their offer.

I'm sorry if this is considered a silly or insensitive question but I just wondered if anyone’s seriously considered surrogacy?  You can use your own egg and sperm, if you have them, so the surrogate would be in effect renting out her womb.  Obviously there are legal implications, but I think if you go to the US you are considered the parent immediately and therefore have full rights from the beginning.

AFM,  I have a little good news - I've got an appointment confirmed with Dr George at the end of February.  I would have had to wait 'til end of March but just before me phoning someone had called in and cancelled.  I can only think that it was cancelled because they got pregnant so a bit of good news all round 

 

[Martha Moo]

hi again ladies

Just bobbing back to post on the new thread

Fiona, our histories are quite similar, i suffered awfully from the onset of AF at age 13, embarrassing to say i hadnt been given the prep talk so when my first af arrived i was totally freaked and was going to A&E  my sister called round and she said silly billy its AF but i didnt expect the pain like that from then i was dosed up on ibuprofen and paras until age 15 when it got worse and told its all part of growing up and becoming a woman!  At 26 it was that bad and had been told no way would i ever get pg so with that in mind i begged for a hyst but was declined Mr R removed one ovary at 30, suggested hyst at 31 had 2nd opinion then and more recently last year the 2nd ovary removed but still have the womb there in hindsight we said we may have DE but like you the stress and anxiety i dont think i could cope with after my last cycle

I hope that your gp is sympathetic and Mr R is agreeable  to the fhyst

Melanie fingers crossed that AF/OC makes herself known more regular

AFM i have a double appt booked with gp tomorrow, she is very good but dont think she has a full understanding of how endo affects us ladies, shes tried me on acupan which make me feel so ill its not an option, the tramadol give me hallucinations so i think her idea would be to wait to see cons ooh nice one only 3 wks to go, i was awake til about 4am with the pain of burning pelvis and ? adhesion pain where left ovary once was

Best try and get some chores done, namely ironing if i let it build it takes forever to do!

Em

 

[floofymad]

Hi everyone,
Not sure if I'm posting in the right place....
Anyway, I have Stage 3 endo which was finally found during a lap in July and burnt off. Mostly on my bladder, uterus ligaments, outside of womb and a few other areas. Lap didn't stop pain and gyno tells me there's nothing else to do..
Been ttc for 14 months. On clomid for 3 months until next FS appt.
Hope to talk to you all soon x

 

[Devonmaid]

Hi all
Just popping into to update. Had my Lap in November when had endo 'shaved' off wall of bowel, bladder resected (left with 2/3's of my original bladder) and appendix removed as this also had endo on. Ovaries and tubes look good apparently. Had my follow up appt today with consultant who has been fab (finally someone who understands) and he is more than happy with my recovery..so back to work tomorrow! Mixed emotions but should be fine once i get going.
Have decided to try naturally for abit (consultant suggests for 8-12months) before reconsidering more IVF although bit twitchy bout this as level 2 immunes highlighted some problem areas. Just hoping these may have improved with removal of hopefully all endo in surgery. Fingers crossed 2011 year for lots of BFP's!
D xx

 

[smcwales]

Hi everyone

I am going to try and join in here and try to keep up with you all!

I have stage iv endo and I am due to have a lap on Feb 15th where they will do excision.  I was referred to IVF Wales on November 24th (at last!).  My dh has had SA tests which they said there are plenty there to go ahead with fertility treatments lets just hope it stays that way for the next 12-18 months until we get to the top of the list.

 

[Catherine-Chloe]

Bookmarking x

 

[skyblu]

Hi ladies,

I'm sorry I'm just having a moan, it is 2.30 am and I have not slept a wink.
This endo pain is a right bloody pain in the
You would think after nearly 20 years I would be used to it, and it is not even a af moment.
Sorry for moaning.
Hope you all are as well as you can be with this horrible disease.
Skyblu.

 

[Devonmaid]

Sending you hugs Skyblu
xx

 

[Martha Moo]

Hi ladies

sorry havent been around much this week, have been poorly but bit better now (and a bit of self pity going on)

Catherine i hope that you have recovered from the pneumonia  and are building your strength for your IUI

Sweets how r u, panel next month am sure you are going to do fine, hows the pain now honey, can you make chat on wednesday

Nickym any news on your start date, will msg or txt you wednesday hun 

Skyblu oh sweetie, i dont think we ever get used to the pain (plus we shouldnt have to) i found during cycle almost as bad as the af pain with endo  are you still using the fentanyl if so do you have anything to top it up with

MrsMaguire, ooh thought of you this week! how r u doing hun

Devonmaid how r u feeling after your surgery hun

smcwales, are you counting down the wks to yur op, is it not possible for your cons to push you up the list a little, my cons put together a letter to the PCT and i luckily got pushed through quicker maybe worth a try

Fiona how r u hun
i hope pesky af has left you honey

Floofymad, welcome to the thread, you are definitly in the right place for support, your endo sounds a little how mine was after diagnosis, how r u finding the clomid, when is the next FS appt have you found the clomid board, a few of us am sure have tried clomid so any questions feel free to ask away honey

Melanie how r u doing honey
for a regular AF and looming BFP in the coming months

Shrimper wow is DD now a year belated
sorry to anyone i missed

AFM
went to see gp on tuesday, the double appt i had asked for was only a single one
before i had DS i used to suffer lots of bladder/kidney type pain that has been awful, shes treated with anti biotics in case it is a UTI but suspects kidney stones, not medically qualified but you just know the familiar type of pains dont you, if after the anti b's its still there she wants me to go for a scan to rule it out, altho i may wait until i see the endo spec in a fortnight to get his view on it, have managed an extra hour or two sleep at night, tho she suggested reducing acupan to 1 and taking with paracetamol as 2 x acupan make me too zombified and sick, she doesnt want to do anything for pain as close to seeing endo spec and she wants me to find out where the closest pelvic pain clinic is um isnt that her job lol!

love to all
Em

 

[MrsMaguire]

Hiya,

Em - I've got endo on my kidneys, the pain is pretty horrific, but all of my consultants have said its pretty risky surgery so its always been left. In my last lap I had to have bilateral ureterolysis which is a fancy word for untying them from endo and adhesions. If you've got adhesions on your ureters it could cause kidney issues and pain, also bladder issues depending on the location of them. I've had to ISC for nearly 2 years now, the NHS were pretty proactive at first but then I got left to it. Do you ever have trouble trying to wee? I generally try before hand and it feels like I'm really straining and forcing it through. You'd think they'd be more proactive with pain relief. Everyone over the other endo site seem to be on OxyContin and Oramorph. It would appear that GP's are just handing out bottles of Oramorph like shots at a party! It appears we've got dodgy GP's!! Have you got Z's nursery place sorted for next year? The year after you'll have the fun of school too!

Skyblu - I really hope the pain has abated now hun 

SMC - welcome to the thread hun, are you all prepared for the op?

Devonmaid - can they boost things for you with clomid in the meantime, I know its not ideal with you just having all the endo excised. Have you seen the immunes thread for the natural remedies that can help with immune issues. I'm taking the green tea extract and vitamin D3 as they're meant to help with an overactive immune system and NK probs, the B vitamins are good and come as a general tablet, you can also add is 50mg of B6 from Holland and Barrett that should promote a good healthy cycle. If you're not taking anything at all you could consider Agnus Castus which some people on the net have called natures clomid, but it can't be mixed with OI/IVF as far as I'm aware.

Floofy - are you over on the clomid thread as well? Wishing you lots of luck with the tx. I think the explanation for the pain could either be nerve damage from the endo, adhesions which may have grown already, or other theories surrounding microscopic endo. Clomid generally won't help endo anyway as for some reason it promotes the growth of it. When I was ttc 4 years ago I ended up with a hefty endometrioma, so watch out for any significant pain during BMS. Are you having monitored cycles with ovulation tracking?

My pain is still pretty bad, but its more the rheumatoid arthritis now, typing so much doesn't help, the endo pain has abated quite a bit which is good. I was waiting for AF to start taking my clomid, I had some cheapie tests left over and I've got a faint BFP. But after all the miscarriages from last year I'm sat here waiting for the worst. I'll feel more confident if I can get to next Friday, but I'm sure I've got more chance of winning the lottery as the big man upstairs just seems to want to repopulate heaven with angel babies at the moment which is annoying. I've been taking the supplements though, so if the issue before was with luteal phase issues, I'm hoping the levels of B6 I've been taking has boosted things.

I've given up praying to the big man upstairs and his various subordinates who are meant to intercede prayers as the pregnancy in September resulted in me going to St Gerards church, receiving mass and prayers, praying in front of St Gerard (the saint for pregnant peoples) as well as having a fair few people praying for me and it resulted in a miscarriage. The one where I had retained products which led to an infection, before the scan I was praying to anyone who would listen for a miracle baby to be on the screen, instead I just had a dodgy looking lining. I'm a relatively well behaved Catholic, so I don't know what more else I can do to please him. All I want to do is make DH a dad.

DS is mardy that we didn't make him Gruffalo crumble for dinner, not sure where you purchase such meals!

Hope everyone is as well as can be.

xx

 

[Devonmaid]

Hi

Holly - am doing pretty good now after op - didnt think I was ever going to be at one point but amazing what time does. endo pain much less now only some aching in hips-anyone get this when ovulating as seems to be happening mid cycle?? Am just not sure if am actually ovulating. Is there a blood test can do to check this? Had first AF coupla weeks ago and so much better..long may it continue!

MrsMaguire- Thanks hun for your advice. Is D3 different to just Vit D?? Am taking Agnus Castus and been taking for bout 18months. Clomid suggestion definately food for thought, never thought of that.

Hope everyone else doing ok
Dxx 

 

[floofymad]

Hi,
Holly - I found clomid ok this cycle actually. I usually get endo pain on and off all cycle, but this last cycle, I didn't get any pain for 16 days (apart from usual ovary movements etc) then I got quite bad pain for last 10 days up until Aunt Flo showed. Wouldn't say the pain was any worse than a usual cycle. Have next appt with FS on March 7. Thanks for your reply and support.

Mrs Maguire - I had heard about clomid worsening endo so I was nervous taking it. They're not monitoring me either, maybe they will do after this 3 month course?....  At first my gyno was quite dismissive over my recurrent pain and said everything went smoothly, but next time I saw him, he said it could be microsropic endo maybe

 

[MrsMaguire]

Hiya,

I hope the clomid doesn't affect you in a negative way. Are they asking you to have Day 21 blood tests to monitor progestone?

I really hope you fall pregnant in the three cycles so you won't need to go back and see gynae 

xx

 

[skyblu]

Thanks ladies for your msgs,

I am a little better today but very tired, so went to bed for a few hours this afternoon.
I haven't had pain like this for a while now(accept for af times) but this is not af related, so by my own knowledge on how my body and endo react, I would say Ive either got another kidney infection(endo on kidneys) bladder infection or just inflammation of endo. Dh wants me to go to gp tomorrow but I know what will happen, they will send me to hospital then they will stick a line in for antibiotics then I will be sick and have the runs and I will end up feeling like sh*t and worse off than I am now and also it will mean being in for 5/7 days which I cant face
So for now I will drink plenty of water and keep up with the painkillers and see how things are in a few days.
With so much swine flu going around I think hospital is the worst place to be at the mo.

Holly, yes I am still on Fentanyl, but when I am this bad I also take Oramorph and Paracetamol, which last night did bugger all which is why I think this is either an infection or inflammation.
I am a little better today,thanks.

Mrs Maguire, I really hope you do have a BFP, I will keep my fingers crossed for you


Devonmaid, thanks for the

To everyone
Skyblu.xxx

 

[skyblu]

Holly, sorry forgot to say - I dont know where you live but I know there is a pain clinic in Hafordwest in West Wales.
I hope this helps.
Skyblu.x

 

[English Rose]

Endo on your kidneys that does sound nasty!!  I had kidney stones 19yrs ago, the only good thing about that was the Pethidine.  I did try and get my Dr to prescribe me this for my AFs but he said that all women go through pain at that time of month 

AFM – AF has not arrived.  Am on day 30 today and did a test Saturday, my usual day, as I didn’t want to spend the whole day with false hope. So it was nada and I spent the whole weekend fed up   Each month I cross my fingers and hope and since ttc that is around 117 times - just wondered at what point I should get the message.  A new twist is I keep having these moments of feeling sick.  Friday it was so bad I actually put a bucket by my desk….just as well I work from home!!  And I’m getting twinges on my left ovary so I think I might stop the clomid and when AF does show up I’ll book a scan to check.  Can’t have alcohol, can’t have caffeine and if I wasn’t watching my weight I’d be gorging myself on chocolate right now    Seems like I have that Monday feeling 

 

[English Rose]

Update: AF has arrived    Have booked a scan for Wednesday.

 

[MrsMaguire]

Hiya,

EnglishRose - the kidney pain is the only one that really takes my breath away, the general endo pain is relatively manageable. Sounds like your GP is about as good as mine! Just posted wishing you luck then saw you'd posted whilst I was writing this. I'm so so sorry hun. 

Skyblu - Hope you've found some relief from the pain hun. Have they offered to do anything for the pain on your kidneys. I respond quite well to GNRH therapy, that almost gets rid of the kidney pain completely. What strength fentanyl patches are you on? I had them briefly a few years back, but couldn't function at all, I decided to try and take a holistic route.

I'm having a bit of a bad day. Had quite a bit of trouble with SIL, I'd asked DH if we could keep contact to being like if we're at his parents and she's there. He decided to go on a bit of a rant about my family as they don't get on unfortunately, being a typical man with a strop on he turned around and said he can't have kids we me as they'll have my families bloodline! Bit extreme! I got really upset last night, I kept saying that I can't cope with not ttc esp with all the people that are pregnant! I might ask him later if I should ask my consultant about getting steralised during my lap if its his final decision.

Still getting faint positives, but sure it'll all end as normal tomorrow! (Not mentioned it to DH as thought if we had another loss before starting tx then it'd put him off, generally as he's in a mood I'll just keep it to myself)

My bladder is still playing up, the pain was pretty bad this morning, so dosed myself up with pk's and took some cefalexin I had stashed away. Ooh the sun is coming out.

xx