A Newie with Stage 5 Endo - Advice?

I just found this great forum tonight.... Could not sleep ... got a bit on my mind....

I had a Lap 2 weeks ago today.... This was due to infertility and lately (last 12mths)ending up in bed unable to move in so much pain.... (worse than childbirth..:( ) ( Have suffered from pain as far back as I can remember and have a high pain threshold....)

Well I had my followup appointment today and the news was not good. Stage 5 endo involving uterus, tubes, ovaries and bowel. Extensive scaring, adhesions and fusing....

My gyno, who is a very good one said its the worst of his patients he has seen in the last 20years :( and too extensive to do anything for me and is refering me on for surgery ASAP. He has told me that if I had not been wanting to fall pregnant he would have reccomended a full hysto....

I have left my Gyno (which I have only being seeing for 1 year) scratching his head as to how it got so far without being diagnosed earlier... Had all the symptoms but brush offs from General GP's and Womens Health as to "Its normal to have pain"..... have left me with almost everything fused .... except for my bladder luckily....

Any advice, support and if anyone is willing to share their experiences with endo would be very much appreciated.

Sorry for the long post.....

Many thanks

Mumszword

Hi Mumszword,

I think I know just how you feel!

On account of GP brush-offs, my endo was not discovered until I was already in a complete mess.

I have severe endo in my pouch of douglas, which has fused my uterus / ovary / vagina / bowel together. I'm very much looking forward to my upcoming surgery to get it all sorted out. I am so sick of the pain, fatigue & bowel issues. After that, I'm really hoping to be able to fall pregnant.

Today I am on a prescription painkiller (Tramadol 100mg SR) and I can STILL feel some pain.

Please feel free to email me for support and sharing. I can send you some pics from my last lap.

Cheers :redface:

Mumszword and Rainbow,

Don't give up hope. I was diagnosed with endo as a 19 y o after a lap and had many more, also Danazol, Primolut and other things. TTC but had 2 m/c and ended up with another lap after a D and C. Dr there said I had the worst endo he'd seen but he'd done his best, wanted me to go on GNRH agonist and was not happy that I wanted time to think it over. I was aged 30. At my next appointment I was pg and neither he nor I was optimistic but I had the baby albeit with lots of ligament pain through the pregnancy. 2 more pgs and then 4 m/c later, here I am facing another lap. The good news is that I did have kids, the bad news is that even a hysterectomy cannot always give relief. Seek a second or third opinion. I find acupuncture and TCM helps me too.
Good Luck, Jo

Ditto what Jo said. Dont give up.....there is hope, you've just got to find the right gyno and treatment, and progress to pg if you want.....Best of luck

Thanks everyone for your advice and support. Your advice and kind words are appreciated.

Its funny how after diagnosis I sort of breathed a sigh of relief but also had to try not to cry.... double dutch I know.... but after years and years of going to the doctor and feeling like a hypercondriac (spell?) its finally good to know it was not all in my head and that they were the ones misdiagnosing....

I am off to a new specialist (that my current specialist is refering me to) real soon to check out my lap pics and work out a plan of action....

Rainbow: If you don't mind me asking how long ago were you diagnosed? I can't certainly relate to your discription of your diagnosis. If you don't mind I might take you up on your offer and email you at some time to chat. Is this ok?

Austrajoey: Your comments about ligament pain just turned a light bulb on for me..... I have been blessed with a beautiful daughter six years ago. During that pregnancy I was admitted to A&E for extreme pelvic pain - after much discussion amoung doctors they sent me home saying it was just normal and that it was just the normal adjustment of my body growing.... but I look back now and realise this was not the case. Could you let me know what TTC means? I am not very internet savay unfortunately and don't understand all the abreviated lingo.... thanks

Magic: As I am extremely new to this I am not aware of what options are available which makes it very confusing.... I know, I definately don't want a full hysto and also, I don't like the sound of alot of the drugs they use to treat the symptoms with their side affects too... Do you have any advice or experiences with other forms of treatment?

Thank you girls for replying. I am a great believer in weighing up all the options and seeking advice from others - as they have been there and often have alot of wisdom and knowlege to impart.

Hi Mumszword,
TTC means Trying To Conceive. The pattern of my life for the past 3.5 years:(

I have had the worst endo pain these last 2 cycles and have booked myself in to see my lovely gynae for a possible laparoscopy. I haven't had one since 1995! and before that had about 4 from 1984 onwards as a teenager.
All the best. I've been pg 9 times ( but m/c 6) and all the time I had such strong ligament pain that I was checked out for ectopic pg. I also have read that endo doubles your chance of m/c.

Jo

Hi,

After reading your stories, I feel I can't complain. I apparently had/have stage 6 endo? not sure exactly what measurement that entails but it was everywhere except my uterus, tubes and ovaries. I was blessed with one natural pregnancy after 6mths zoladex and 6mths to get my cycle back - a year in total. I was 26 at the time and had a history of endo since I was 22 (lap). My last lap was Sept 06 - really bad again. We have been ttc again for 20mths. I ovulate really late - day 22 which I don't think helps.

Which brings me to my question. Does clomid help you to ovulate at a better time ie not so late? My ovulation is regular just late. I also see a Natropath and acupuncturist (ttc naturally) but no luck this time. IVF is ticking closer....

Any advice appreciated,

Don't give up hope,

Mich

hi there mumszword,
i'm so glad you have a diagnosis and are now on your way to getting sorted out. i am still waiting for one myself and have been brushed off also as just having normal womens prob's since i was 22, i am now 27. I am just hoping my insides aren't in a mess when i finally get seen to if they discover endo. anyway, it's a shame more doctors aren't aware more of endo and we could get this looked into earlier, as it seems there are lots of women in our situation..
good luck with your surgery..;)

Hi Mumszword
My endo wasn't as extensive as yours but caused me enough grief so I feel for you. I had been diagnosed with adenomyosis by one gyno (who keeps appearing on TV) but told it wouldn't impact on TTC. It was only more than 12 mths later that a GP at the same clinic bothered to phone another gyno about me and consequently refer me to him that the endo was diagnosed, treated and we were lucky enough to conceive.

I take it you are in Sydney. I've heard from some of the girls on here that Michael Cooper is the guru up there. I think he does do some work at RPA. If not, maybe you could see him privately if you are insured.

Good luck.

Its good to hear from all you girls. Thanks so much for sharing.

I went to see the specialist in Sydney:D

He confirmed I have very significant Endo with bowel involvement and cul de sac obliteration and ovarie involvement too. But he left me feeling confident that he will be able to help.

He says that I really have one option available due to the extent of the endo and that is surgery. Hormone therapy won't work and he said its too far gone to use the lets see what happens approach. He is hoping to complete the surgery via about 6 key holes. I am also more than likely going to need bowel resection too...I have been told to expect at least 6 week recovery period....

I am now waiting for dates of when the surgery will be done.

Michelle, not sure about the clomid as I am so new to all of this. Up to 4 weeks ago I knew nothing about endo.....I have been TCC naturally so have not looked at hormone therapy. It has been like a whirl wind with learning about the disorder and how to treat etc.

Thanks again to everyone who has replied and shared. Would love to hear how you are all travelling with being diagnosed, treatment and also TCC.

Take care and kind regards

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Rainbow: If you don't mind me asking how long ago were you diagnosed? I can't certainly relate to your discription of your diagnosis. If you don't mind I might take you up on your offer and email you at some time to chat. Is this ok?

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I was diagnosed in March 2007, after an ultrasound in Feb.
Certainly email me if you like, it will be good to chat.

I'm going back to my gynae next week for endo, I've had it since 15 and diagnosed at 19 y o but my last lap was 12 years ago. I have pain constantly and now have aching and dragging pain after sex, not conducive to ttc. Sorry if TMI- any advice?
Jo

Hi Michelle,
I was wondering if you would try something. I have read a lot on the web about getting a cycle more regular, mine is fine (28-29-30) but i looked at to make sure when i ovulate (LTTTC). Anyway, it is quite cool and might help you manage your ovulaton!?? Worth a try!
Ok, so apparently to get our bodies back to a biorythmic cycle which is by the moon (don't laugh give it a chance!!) We need to sleep in complete darkness and allow light into our bedroom for the 3-4 days before our ovulation( when we want it, about day 13-16) to bring on our ovulation. So many of us sleep in the such light up environments and we are just used to it. Street lights out side our windows etc. I live in London, so you can imagine. Well they say to block out all light and when you open your eyes you should not be able to see anything.
Anyway, give it a go and gradually over 6 months or so, you should be able to bring your ovulation back a few days. It is amazing how our bodies respond to the environment we are in and at the very least you will sleep really well.
Tell me how it goes.
I will be able to swear by it if i am preg this month. 1 week to go and i can do a HPT. I am slowing going out of my mind waiting.
Take care and hope this helps you
Hippy Mum

Hi Mumszword

Sorry for the late reply, I just discovered this thread....I was diagnosed with "severe" endo (they didn't give me a stage) in March 2005 after I saw my GP for a checkup and asked her for a different pill as I was spotting and still getting pain (I rated it as 12/10! I also have a high pain threshold!). She said "Oh you shouldn't get hardly any pain on the pill" and sent me off to the gyno.

The lap showed I had adhesions, scar tissue and endo throughout my pouch of douglas, all over my ovaries and uterus, and my bowel was attached to my left ovary. I later realised that was the reason I had horrible bowel movements at ovulation and period time. The gyno did dye tests on my tubes and both are completed blocked. The left one has also got a bit of a twist at one end. The gyno removed all the endo (hopefully). She wanted to put me on Zoladex or Danazol but I refused. I had zero period pain for about 1 year after the lap. Now it's slowly creeping back (6-7/10).

I find eating well and exercise helps cope with the pain and I hope it is also doing my insides good when it comes time to do IVF.

As all the other girls say, don't give up, there are lots of options out there.

Best wishes...

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Hi Mumszword

Sorry for the late reply, I just discovered this thread....I was diagnosed with "severe" endo (they didn't give me a stage) in March 2005 after I saw my GP for a checkup and asked her for a different pill as I was spotting and still getting pain (I rated it as 12/10! I also have a high pain threshold!). She said "Oh you shouldn't get hardly any pain on the pill" and sent me off to the gyno.

The lap showed I had adhesions, scar tissue and endo throughout my pouch of douglas, all over my ovaries and uterus, and my bowel was attached to my left ovary. I later realised that was the reason I had horrible bowel movements at ovulation and period time. The gyno did dye tests on my tubes and both are completed blocked. The left one has also got a bit of a twist at one end. The gyno removed all the endo (hopefully). She wanted to put me on Zoladex or Danazol but I refused. I had zero period pain for about 1 year after the lap. Now it's slowly creeping back (6-7/10).

I find eating well and exercise helps cope with the pain and I hope it is also doing my insides good when it comes time to do IVF.

As all the other girls say, don't give up, there are lots of options out there.

Best wishes...

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I had the dye test and luckly enough the dye flowed freely through my tubes.... so I am really thankful for this....

I have surgery scheduled at this stage for two months time to remove all endo if possible. I will get to find out how far spread it is at this op and depending on how much repair they have to do will depend on how long I have to spend in hospital..... I have been told to allow anything from about four days to two weeks..... all depends on what they end up doing and how long I take to recover from their handy work :D

Atleast I can see a light at the end of the tunnel. DH and I have decided not to do IVF and rather to leave it in the lap of the Gods when it comes to TTC. It just seems to be the better way for us as there will be less stress and also financial burden. I believe if its ment to happen it will once I have had the surgery and recovered from it... Also I have my age I have to factor in ..... reproduction wise I am no longer a spring chicken so best to let nature decide.

If surgery can atleast get rid of the nasty affects of the endo then I will be happy.... hopefully more energetic and a happier person.....

I definately don't want to use hormone therapy if at all possible in relation to the endo.... I have read a little about it and don't like the sound of the affects it can have on your body.... I feel like I would just be trading off one problem for another.

Well thanks again to everyone for your comments, advice and sharing your experiences.... I really wish everyone the best in beating their endo and TCC.

Take care

And remember "Faith is the substance of all things hoped for and things not seen"......

Good luck with your journey, I wish you a quick and safe recovery from your op and pray that you will get a beautiful baby soon after. Don't give up hope,

Mich

Mumszword-"Faith is the substance of all things hoped for and things not seen"......

Great quote!!

I am really trying to relax and not get too anxious or despairing- it stuffs up my hormones totally. I am booked in for a lap next week, trying to negotiate a better date with my Gynae at the start of a new cycle so I can still ttc this cycle. I have no time to waste.

Has anyone tried TCM and AP? I've been on it for 2 years or so.

Jo

PS- I am convinced endo is associated with m/c, but my 2 Drs are dubious. Anyone heard anything?
Jo

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Mumszword-"Faith is the substance of all things hoped for and things not seen"......

Great quote!!

I am really trying to relax and not get too anxious or despairing- it stuffs up my hormones totally. I am booked in for a lap next week, trying to negotiate a better date with my Gynae at the start of a new cycle so I can still ttc this cycle. I have no time to waste.

Has anyone tried TCM and AP? I've been on it for 2 years or so.

Jo

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Good luck with the Lap Jo - I hope it all goes well.... are you having endo removed with the lap this time or is it just for a look see to see how things are travelling?

Not sure about TCM and AP (not sure what this stands for) - I have not had any therapy for my endo or infertility at all appart from the initial lap 2 months ago to work out what is going on..... (amazing considering I have been TTC for over 4yrs now after my dd was born and also TTC prior to her arrival for about another four years too..)

I was just wondering if anyone has had excisional surgery for endo and what sucess they have had with doing so? I believe with ablation it only removes the top part of the disease where as exisional is more complex surgery but has better results..... I am planning to have major excisional surgery in the hope of erradicating the endo with the hope it will not return. My understanding is that if all is completely removed the chances are increased of long term relief and increase in fertility are much greater.... your thoughts would be appreciated....

Hope everyone is well and wishing you all the best with TTC and upcoming OP"S too. :D

Hi Mumszword,
TCM is Traditional Chinese Medicine and AP is acupuncture.

I am having the lap to see how things are going with diathermy to reduce the endo if necessary.

4 Yrs is a long time to TTC ( we're up to 3 yrs 7 months) - how do you keep from despairing as I do sometimes?
Jo

Hi,

I understand excision is best for fertility and most chance of getting preg in 3 - 6 tries post op approximately. I had the surgery, but no luck for me (9mths post surgery). I believe the increased rate of fertility post excision is based on studies and my natropath agrees with research etc.

I am having herbs (not chinese but from Natropath) and acupuncture ttc #2 (just natropath for #1 DD). Natropath gave it 6mths and said should get a result in this time if not, needed more investigation (hence I had the lap and excision of endo). now 9mths later, natropath suggested acupuncture. I have just had my first cycle and waiting to see if AF comes????

We look at IVF if no luck by end of year.

Hope that helps,

Mich

I can vouch for excisional surgery. It certainly worked for me I had stage 5 endo which was finally diagonsed last year after 12 or more years of misery.

The Godsend, Dr Michael Cooper performed two surgeries on me and less than 2 months later I was pregnant. (Currently 30wks) I add that the surgery knocked me for a 6 and I still cannot work out how I fell so quickly while recovering but hey Im not aguring....

The interesting thing I was going to post about but will breifly mention here is that now that I am pregnant I have been told I have an irritable uterus which is causing me to have preterm contractions requiring medication to prevent labout from progressing prematurly. My OB wonders if this is connected to the endo and/or surgeries (8 all up over 12 years)...Food for thought.......

I wish all the ladies awaiting surgery the very best and hope that your pain stops as equally as fast as mine did.

Hey there guys,
I had it burnt off 8 years ago and it has grown back since over time.
Now i take, Maca (peruvian root that helps balance out hormones, great for energy and libido) and Cinnamon Poria, and Free Flow (chinese meds) to help blood flow to the area, unblocking tubes and healing. I have reduced sugar intake and stress and fragranced things among other things.
I have tried a few natural things over the years. I think all has helped, but still TTC.
Best of luck with it.
Hippy MUM

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I can vouch for excisional surgery. It certainly worked for me I had stage 5 endo which was finally diagonsed last year after 12 or more years of misery.

The Godsend, Dr Michael Cooper performed two surgeries on me and less than 2 months later I was pregnant. (Currently 30wks) I add that the surgery knocked me for a 6 and I still cannot work out how I fell so quickly while recovering but hey Im not aguring....

The interesting thing I was going to post about but will breifly mention here is that now that I am pregnant I have been told I have an irritable uterus which is causing me to have preterm contractions requiring medication to prevent labout from progressing prematurly. My OB wonders if this is connected to the endo and/or surgeries (8 all up over 12 years)...Food for thought.......

I wish all the ladies awaiting surgery the very best and hope that your pain stops as equally as fast as mine did.

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Firstly Congratulations to you and your OH on expecting your first child..... Just think in ten weeks you will be a mum:D That is just so exciting and extrodinary after the surgery you have been through..... I am really please to hear it is all working out for you and joel :D It certainly sounds like your doctor Cooper is a miracle maker and blessed with the gift of being able to change womens lives for the better. You will have to send him a picture of your new bundle of joy to stick up on his wall.

Would you mind if I asked about your surgery and recovery after surgery...... you mentioned it knocked you for a six......

How far appart were your surgeries? Were you in hospital long? I am starting to stress a little about surgery so any insight would be very much appreciated......

How long did it take before you could get out of bed and cook a meal and do normal household duties? I am a little worried about DH being able to cope with working full time and looking after DD (6) and keeping the house running.... as I have no other family to rely upon for help .....

All the best with the upcoming birth of your beautiful miracle baby...... its so good to hear when someone has been sucessful in TTC.

Be sure to let us know how it all goes :D

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Hi Mumszword,
TCM is Traditional Chinese Medicine and AP is acupuncture.

I am having the lap to see how things are going with diathermy to reduce the endo if necessary.

4 Yrs is a long time to TTC ( we're up to 3 yrs 7 months) - how do you keep from despairing as I do sometimes?
Jo

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Hi Jo,

Thanks for educating the uneducated on the abbreviations of the forum.

I have not yet tried herbal and Traditional chinese medicines - So far I have been lucky enough to be able to deal with the side affects of endo with codine and paracetemol. I have a pretty good pain threshold and have relied on the power of prayer to get me through.

I have finally got to a stage in my life where I have a peace about things and know that what is meant to be will happen so instead of counting the days, months and years of TTC, I try to focus my attentions on the postive things happening in the now.... Don't get me wrong..... I have my moments and sometimes I withdraw from things and I wonder why life can't be easier ....... but I also remember that I am blessed to have my DH and DD - And I try to remind myself of what matters most...... this and my faith keep me going. I try to count my blessings everyday and remember that if I have faith the size of a mustard tree well then I can move mountains.......

Take care and try not to dispair Jo, remember to count your blessings in your life because life is so short and precious - enjoy every moment and seize the day.

Keep the faith.......

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Hi,

I understand excision is best for fertility and most chance of getting preg in 3 - 6 tries post op approximately. I had the surgery, but no luck for me (9mths post surgery). I believe the increased rate of fertility post excision is based on studies and my natropath agrees with research etc.

I am having herbs (not chinese but from Natropath) and acupuncture ttc #2 (just natropath for #1 DD). Natropath gave it 6mths and said should get a result in this time if not, needed more investigation (hence I had the lap and excision of endo). now 9mths later, natropath suggested acupuncture. I have just had my first cycle and waiting to see if AF comes????

We look at IVF if no luck by end of year.

Hope that helps,

Mich

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Thanks for sharing Mich.

Wishing you all the best with TCC and I hope you hear some good news before the year is over......

I will keep you in my prayers :D

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Hey there guys,
I had it burnt off 8 years ago and it has grown back since over time.
Now i take, Maca (peruvian root that helps balance out hormones, great for energy and libido) and Cinnamon Poria, and Free Flow (chinese meds) to help blood flow to the area, unblocking tubes and healing. I have reduced sugar intake and stress and fragranced things among other things.
I have tried a few natural things over the years. I think all has helped, but still TTC.
Best of luck with it.
Hippy MUM

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Thanks for sharing....... No wonder why I ended up with endo..... I have a sugar addiction, I am a sucker for stressing and have a very stressful job and have a love for fragranced things..... :doh:

I have also heard that artificial sweetners are a NO No too......:doh:

Looks like I am a hopeless case...... doing all the wrong things......:redface:

My hat off to you for being so healthy and careful with your diet and life style......

I am a work in progress...... trying to reform my unhealthy ways.......

Ha Mumszword, you make me laugh. None of us a prefect babe. The worst of it for me is that i crave sugar like there is no tomorrow at the worst time of the month, just before AF. So it agrovates it. You just have to do what you can, and one ting at a time. When i first found out i had endo, a long time ago and had a cyst removed, i went on a big detox and cleansed out my diet. But have always had a weakness for sugar and cheese. One by one we just started growing a dislike for things. eg stuff with numbers in it, or stuff with artificial sweetners, or MSG, or flavourings, or palm oil etc etc etc. ONce you take off one at a time it is not so overwhelming. Thats if you want to do it that is!! hee hee.
We now use coconut oil on our skin instead of moisturiser, that is our latest change.

Besides you thin ki am a health freak, you should see my mother. My brothers can't stand to go there empty handed these days or they would starve. (there is never anything to eat- they would say) well that is nothing that can just be opened and eaten with out soaking or cooking etc etc. It is brilliant. i would love to have that one day. But for now we still have a bit of packaged stuff. There is some expense involved in going back to basics and time too, you have got to be able to make time.

A work in Progress is a good way to put it. Well done for doing what you ahve done so far. Who knows why we have endo babe, whether is is emotional, environmental or diet or whatever. If we knew all the answers we would not be here!! But we need to try and find a way of making it heal so that it doesn't create other issues later.

As for frangranced stuff, read up on Zenoestrogens and Phytoestrogens, it is interesting and although it is not conclusive, there seem to be a few links to these things in our lives that play with our hormones unknowingly.

I will leave you alone now, you poor tning. I keep thinking i will calm down and have less to say one of these days but i guess that hasn't happened yet. It is interesting reading back my posts to myself. I try not to change them, but i do learn so much about myself and what i need to address.

Take care and speak soon
Love Hippy Mum (Jodie)

Hi Mumszword
Our symptoms sound very similar. I am at the one month mark of recoering from a bowel resction where they removed 40cm of diseased bowel and my endo had affected most of my pelvis including bladder, appendix, ovaries, POD and tubes. My rectum and appendix were stuck to something and endo was very widespread and extensive.
I highly recommend the surgery as right now i can say im disease free, and have not had any endo related pain that was debilitating before my op.

if you want to talk more feel free to email me :)

YDI
Hi, congrats on beating the endo and disease, i hope this brings you a bundle of joy very soon. i alot of girls on here have had such great success after surgery. Pain free...hmmm that sounds brilliant.
Good luck and fingers crossed for you.
Hippy Mum

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Firstly Congratulations to you and your OH on expecting your first child..... Just think in ten weeks you will be a mum:D That is just so exciting and extrodinary after the surgery you have been through..... I am really please to hear it is all working out for you and joel :D It certainly sounds like your doctor Cooper is a miracle maker and blessed with the gift of being able to change womens lives for the better. You will have to send him a picture of your new bundle of joy to stick up on his wall.

Would you mind if I asked about your surgery and recovery after surgery...... you mentioned it knocked you for a six......

How far appart were your surgeries? Were you in hospital long? I am starting to stress a little about surgery so any insight would be very much appreciated......

How long did it take before you could get out of bed and cook a meal and do normal household duties? I am a little worried about DH being able to cope with working full time and looking after DD (6) and keeping the house running.... as I have no other family to rely upon for help .....

All the best with the upcoming birth of your beautiful miracle baby...... its so good to hear when someone has been sucessful in TTC.

Be sure to let us know how it all goes :D

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About my surgeries...... I had four in total last year but the last two were major and performed by 'the man' Dr Cooper. The first was in late September - it took about three or so hours, he removed endo from the pouch of douglass, uthrer (Sp?), kidney tubes, cervix, uterus and said that my left side was fused to my bowel. Although there had been a bowel surgeon on stand-by as this was what Cooper was expecting to find, unfortunately the bowel surgeon was busy and couldn't attend. So I was stitched up, Cooper left my kidney tube tied off and other bits and pieces pushed out of they their normal positions to reduce the next surgery time. Further surgery was scheduled for ten days time. On this occassion I stayed overnight and travelled home (2.5hrs from hospital) this was a bad move in hindsight. The pain was bearable and managed by medication but unfortunately I had a reaction to some of this medication and ended up back at my local hosptial 48hrs later as I couldn't breathe and had weird swelling to my face and legs.

The second surgery was performed at a different hospital in sydney to align with the bowel surgeon. This surgery took about five hours (I think) and was totally successful. I small section of my bowel was removed but the affected area was mostly shaved and oversewn. A good part of my kidney tube was removed (but I don't think this is a big thing) and they generally double checked they got everything.

The recovery for this was much harder. I had an IV and morphine drip for about three days. For me I had trouble eating........about ten minutes after eating I would be in such severe pain that the nurses were quite worried. In total I spent five nights in hospital but I think the delay in going home was more to do with the pain after eating, I lost over 8 kilo in that ten day period and generally felt weak from not eating.

If you weren't to experience this, which I was told was uncommon, then I would imagine that recovery would be similar to lap surgery. Although the second surgery was major it was still able to be performed thru six small incisions so no large cut requiring healing. I think that's what makes the difference.

I hope this is making sense.........I'm not quite with it at the moment - my brain is on holidays !!!!

Im lucking to have an amazing partner who did most of the household chores but we don't have a small child and I appreciate that would make things much harder. I did however, make some meals in bulk and freeze them before the 1st surgery and that helped. Perhaps you could arrange a person to come through and clean for you and do your ironing. I know a friend who did this and it only required three or four visits costing approx $80 each and she was back on her feet - hubby was happy - he looked after her and the children (x3) and did the washing and neither had to worry about the house cleaning or ironing. I thought that was clever of them. Just a thought.....

When is your surgery and who is performing it ??

Thanks for the well-wishes re: our miracle baby.......I know it's hard to be happy for someone else when your going thru this. I speak from experience as two of my closest friends gave birth in Nov / Dec last year and it was tough to say the least.

If you have any more questions feel free.........I'm not on here everyday but I will get back to you ASAP. Hope the above helps a little to ease your worries.

Cindy.

Thank you all for replying and sharing.......

Its good to talk to people who know how you are feeling and share the road you are travelling. I really appreciate all your comments and taking the time to share such personal details.....

Its really good to hear from you all. Thank you for talking about what treatments you are using to assist with beating your endo and how your surgeries are going.

As they say a burden shared is a burden lightened and you have all helped with your comments, encouragement and kind words.......

I hope all who are battling with Endo and POCS overcome and have their dreams come true of being pain free and for those who are TCC that this happens real soon.

Stay strong and keep in touch..... I will keep you posted on how I am traveling .

Once again thank you - words cannot express my gratitude on being able to chat to you all and being able to hear how you have all gone with your surgeries and treatment and life style changes ..... I will chat soon.....

Jo

Hi Im new to this so please bear with me Im 23 years old and since 1999 i have been in pain that has only gotten worse Im Very hurt at my doctors for not picking up on my problem Ive been palmed of to theripist and been on every drug you can think off to treat so called "aneixty" thats what they belived to be the cause off my pain stress .....It was not till this year april i belive after my 23rd trip to the hospital ER due to my period pain that a intern doctor at the local ER took my pain as serious can you belive it out of all the trained fully trained doctors it took a newbie who gave me a referal to see a gastroligist who imediatley took me seriously and sent me to a gyno who put me in for a lap it took them 5 hours to fix the damage the endometriosis had caused by being left untreated for so long my internal organs had fused together and were riddled with endo its been 3mths to give me a little break from the years off pain for the next 6 mths i have to go in and get a ZOLADEX implant and take premia continuous daily the last 3mths have been heaven to me compared to my past I don't get my period but my bowel problems still cause me daily discomfort but at least my pain goes away after a motion dose anyone have any suggestions to help with this as i cant work or go out in public due to the fear of being struck down with pain and the urgent need to go to the toilet.

UPDATE-Had my laparoscopy last night and my Dr also put dye through my tubes to find one was blocked- that's probably why I haven't been pg again. I also had a large endometrioma removed from left ovary and had it freed up as it was adhering to my pelvic wall. The right ovary and tube were a mess and stuck to my cervix and even my cervix had endometriosis.

My lovely Gynae said he can continue to see me at the new Private Clinic where he's going after next week and bulk bill me for his services but that all diagnostic costs would mount up, or I could see his (not so friendly) colleague where he is currently(but leaving in a week)

I'm not sure what to do, I LOVE this Dr the most of any DR EVER and have seen him for over 6 years with an excellent level of rapport and service but if I was lucky enough to have a baby I'd be up for a lot of $$$$ and I don't like the hospital he's going to as much as the one he's still at which is a lovely public hospital where I had my DD 5.5 years ago.

Any ideas??

Sorry to hear of all the terrible experiences with this awful condition we all have!!

:

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UPDATE-Had my laparoscopy last night and my Dr also put dye through my tubes to find one was blocked- that's probably why I haven't been pg again. I also had a large endometrioma removed from left ovary and had it freed up as it was adhering to my pelvic wall. The right ovary and tube were a mess and stuck to my cervix and even my cervix had endometriosis.

My lovely Gynae said he can continue to see me at the new Private Clinic where he's going after next week and bulk bill me for his services but that all diagnostic costs would mount up, or I could see his (not so friendly) colleague where he is currently(but leaving in a week)

I'm not sure what to do, I LOVE this Dr the most of any DR EVER and have seen him for over 6 years with an excellent level of rapport and service but if I was lucky enough to have a baby I'd be up for a lot of $$$$ and I don't like the hospital he's going to as much as the one he's still at which is a lovely public hospital where I had my DD 5.5 years ago.

Any ideas??

Sorry to hear of all the terrible experiences with this awful condition we all have!!

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Hi Austrajoey,

Just wondering how your recovery is progressing since surgery?? Sorry I have not replyed to your post sooner.... had a few things going on at the moment :( but hey thats life.....

Did you sort out the matter of if your still going to see your specialist once he moves hospitals?? I hope you work something out so you can continue to see him.

I am still travelling along. My endo has stabilised at the moment and I am still waiting on surgery dates have been changed a number of times and I am now looking at the end of september.... I am happy to wait as long as I get my specialist as the surgeon as I am going as a public patient. so I have to be patient .... lol.....

Well I hope you are doing well take care and keep us posted on how your going :D

Gosh it's hard when it comes down to money isn't it? Not fair!!! I love my Ob/Gyn and he bulk bills. The only thing I could possibly suggest is whether your GP knows of someone who would be cheaper/public.

Hard call though. Good luck with your decision making,

Hugs,

Mich

Hi everyone,
I recovered very quickly from the lap, just waiting for AF to appear so we can TTC again. I hope that the lap did the trick.

I have my follow up Post Op appointment with the not so friendly colleague so I'll see how he goes, then make my decision.

Who do you see, Mumzsword? I preferred waiting till I got my gynae but didn't have to wait long.
Jo

Hi Jo,

Glad to hear your recovering well from the LAP :D

I hope things get to settle down soon so you can continue on your quest TTC.

I hope the appointment goes well with your specialists off sider and he has a change of personality/mood and starts treating his patients a bit better.

I am actually going through a major hospital in Sydney and I don't get my choice of surgeon however due to the extensiveness (SP?) of my endo it requires someone with alot of experience to be able to avoid doing a full hystorectomy to try to preserve fertility and so I am hoping that I get the specialist I have seen in the past - and hopefully he is the one that does the surgery..... I am praying hard to get him but there are no guarentees.... I will let you know how it all goes once I have had the surgery, as I would not like to reccomend someone before I have seen them either IYKWIM..... I will keep you posted though.....

Best wishes for a speedy recovery and TCC - keep me posted on how your traveling :D

Hi Mumszword,
I have since had more endo pain on my Right Hand Side and then AF came- I hope the lap worked..
Jo

Well "D" day is fast approaching ...... Monday is the day!!

I can believe how the last eight weeks have flown since the last failed attempt at surgery LOL....

I am feeling rather aprehensive about it all..... and wonder how it will all turn out.... Just trying to stay positive at the moment.....

How is everyone else.... you all seem to have been a bit quite of late.....

Has anyone heard any news about Joels girl??? Has she had the baby yet? Oh I can't wait to hear the wonderful news of her and Joels babies birth!!! the little miracle baby :D

Well take care all - I am praying for you all for health and happiness :D