A Newie with Stage 5 Endo - Advice?

[Mumszword]

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

[Rainbow]

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

[AustraJoey]

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

[Magic]

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

[Mumszword]

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.

[AustraJoey]

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

[EmnM]

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

[beau_9]

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..

[blackbird]

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.

[Mumszword]

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

I went to see the specialist in Sydney

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

[Rainbow]

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?

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

[AustraJoey]

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

[Gigi1]

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

[Laranna]

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...

[Mumszword]

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...

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

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"......

[EmnM]

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

[AustraJoey]

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

[AustraJoey]

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