Endo updates..... how are you travelling?

Just thought I would start a new thread where members who suffer from endo could post how they are travelling with their journeys, treatments, surgeries, diagnosis and TCC.

I thought it would be nice to have a thread where we could just post how we are going and share our journeys and support each other - as we travel along the road to recovery and beating this horrid disease.

For me I am currently waiting on surgery. I was due to be addmitted to hospital yesterday and had done all the pre-op stuff (bowel prep and pre op meds, tagged and waiting to be taken in for surgery) and waited 5hrs in preadmissions only to have my surgery cancelled. It was no-ones fault really but a huge disappointment. It turned out that the first patient of the day took 7.5hrs in surgery time (instead of the anticipated 3hrs - I hope she is doing ok...... ) and unfortunately that meant my surgery was bumped.... :crying: I felt so bad today about getting so upset and crying in front of my surgeon when he told me surgery was cancelled for the day - I think I made him feel really awful and that was not my intention .... its just that I am on such an emotional roller coaster ride at the moment.... I am now looking forward to my next surgery date.

How is everyone else travelling??

Sorry to hear your surgery got cancelled Mumszword :(

I haven’t gone back to see a doctor about my endo since it was diagnosed. Physically, I have been going well, however my cycles have been gradually getting worse month by month over the last year. So I’m due for another check-up I think. The cramps are getting more painful, and clots have returned and I spot for a week before and a few days after AF and sometimes mid-cycle. I’m not taking any medication as I feel I am coping without it.

I understand completely where you're coming from. Hang in there...do you know when you'll be re scheduled?

I should introduce myself...I'm Kylie, 33 years old & had suffered with endo since I was around 19. I have had 4 laparoscopies to laser the endo & countless meds to try & keep it clear. Here's the good news...after many doctors telling me I would never conceive, I have had three healthy children, with little trouble conceiving (the last one being born 10wks ago). In my case, it seems that ever since I had my first child 6 years ago the endo hasn't returned!:D Anyway..all the best to you. It's a wonderful day & age we live in in terms of medical technology & how it can help us with this disease. Every day I'm thankful that I had the option of surgery open to me!

All the best to you!

hey mumzword this is a great idea! thanks for suggesting it :)

kylie B your story is an inspiration that i needed to hear. thanks for sharing.

my story is recent, discovered severe endo last year on a routine lap investigating infertility. i had NO symptoms which now i know what they are I am eternally grateful for. however, the disease had done a lot of damage and i had poor treatment at first (my journal has more). there is a high prob that i have it in my bowel but my dr and i are ignoring it as i have no symptoms and am focused on TTC.

i have a feeling it is back again but i can't tell without another lap. so i am ignoring this and heading down the IVF path while the drs will still agree to do it. problem is they say the stims of IVF can accelerate the endo so it is a battle to see whether endo or pregnancy will win out!

i am feeling very hopeful and :crossfingers: i will get pregnant this cycle and it will help my endo.

mumsz i hope you get your day in theatre very very soon.

dusty

Hi Girls

I have a similar story to Kylie. Having severe endo which was diagnosed via lapraoscopy, I did 6mths zolodex treatment and since then i have actually been lucky enough to fall pregnant easily with all 3 of my children. We were told that endo goes into remission for about 2 years after having a child, so all our boys are spaced around 2.5yrs apart. We have now stopped adding to our family, so I will be on the lookout once again for any Endo signs.

AF has just returned for me after the birth of our last child 10mths ago. I will go in 5 years and get my tubes tied, so minimal (if any) endometrium will escape inside my body via the fallopian tubes. and I will consider a full hysterectomy in the 10yr plan. If I can keep symptom free that will be good enough for me.

Now that we have stopped growing our family I have considered getting the injection to stop getting AF. AF means no Endo right ?!!? but not sure if I want to deal with other possible side affects of the injection LOL.

So that is basically my story in a nutshell. Goodluck to you all TTC.

Love

Dear Mumzword,
I know exactly how you feel, I found (what I think is) the best place in Sydney..Endo-Gynaecology at RHW, Randwick. Unfortunately there is not enough funding from the govt therefore if you are a public patient the waiting list is approx 12 months. After a few disasters from doctors in my area I decided that it was worth the wait. I had to have a hysterectomy; after waiting all that time I did the same things, the bowel prep was a pain in the neck but I didn't care...surgery at last! I too was bumped that day and I reacted the same way as you did... I burst into tears when the professor took the time to come and break the news to me personally. I think it's a pretty normal response so don't feel bad darling; the next time they put me on the top of the list and all went ahead and I am pain free. I wish you all the luck in the world.
Dear Kathryn,
I never thought to check it out at the time but the only symptoms I had were very painful periods when I was young; about a month or two after getting the Provera injection for contraception was when I experienced all the other endo symptoms. I can't help wondering if it was the injection that unmasked my symptoms. I ended up finding out that I had severe endo, cysts, polyps and adenomyosis. I still don't know what part the injection played but you may want to do some research before you try. My gyno put me onto the Provera tablets to stop my menses saying he preferred them rather than the injection but I didn't ask why. Good luck, I hope you stay healthy and never have to put up with the symptoms again.
Linda

Hi Linda, hope your daughter is doing alright with her infection.

Mumzword, When is your date for surgery? goodluck with it all. Hope you are pain free very soon.

My story, I was only recently diagnosed wtih Endo, though we had suspected that I've had it for awhile. I had painful periods as a teenager, irregular and heavy with the usual clots. Was put on all of the 'basic' pills according to my GP, and in the end was sent away with a prescription for painkillers.
I saw a gyno, who told me that I had symptoms and family history, but was too young to 'have it, as you don't get it until you are 25' he sent me away and told me to go back and see him when I turned 25, and he would then operate on me to remove my endo!

I recently had a lap to investigate why we have been having trouble with TTC #2, and was then told that I have endo. FS said I don't have the typical chocolate cysts, but have sheets of it behind and in front of my uterus, around my ovaries and little spots all over the place.

I had problem periods for years until I found out I was pregnant with my DD, then after she was born, and AF returned, they were absolutely normal, no pain whatsoever, not even a need for panadol, and they were regular!

I'm currently on Synarel for 3 months ( only have about another 7 weeks to go) then we start on IVF.

My mum had it bad when I was younger. She had a hysterectomy at 31. It was everywhere and they initially diagnosed it as cancer and gave her less than 3 months. Obviously they found out they were wrong, and did the hysterectomy and she ended up with a double colostomy (which she no longer has)because it had spread that much.

Nic

Diagnosed: September 2006

Symptomatic since: Pain started 1999, was referred for painful periods put on the pill experienced minimal relief. Pains worsened as years went on and became more GI. Could not eat without pain, painful bowel movements, blood in stool in and out of ER for morpheine pain relief for severe stomach pain usually occuring after eating. Gas pains and bloating and period pain normally starting 2-3 days before period and had me doubled ove rthe entire time, alternating diarrohea and constiapation and fatigue.

Surgeries: 3 gatroscopies, 1 colonoscopy, 1 diagnostic lap & hysteroscopy September 06, Bowel resection (laparotomy) May 29th 07 and excision

Areas of endo found: small and large bowel, 40cm of small bowel removed, pouch of douglas, ovaries, tubes, bladder and appendix.

Fertility: No guarantess but Fingers crossed!!!

Treatments: Been on bc pill, currently on Synarel (GnRH)

Medical help: Been diagnosed by doctors for celiacs, lactose intolerance, ulcers, IBS appendicitis and in fact I had none of the above Go Figure!!! Damn doctors. Was in the ER 6 times in 6months for debilitating pain had to be carried in and put on morphiene, sent home being told i had gastroenteritits on all occasions. Finally Referred myself to a gynae who did my diagnostic lap in sept 06 which got the ball rolling.

Outlook now: am minus some bowel but my surgeons have said that my endo was so extensive and in the top 10 of the most complicated bowel surgeries they have performed. (at least they earned their money!) I am currently disease free Yay!!

YDI
You have had a really rough ride on the endo wave :( Glad to hear you are endo free.

Your's and Nic's story really show the medical profession need to take our concerns seriously and investigate whether endo is a problem, not just so we can get pregnant but also for our ongoing health and happiness.

Here is to a BFP for you soon and a pain free future :)

dusty

YDI – when I was 18, I was in hospital 3 times in the one year with excruciating pain (so bad I passed out each time). Every time I went into hospital the doctors told me I had a “grumbling appendix” and sent me home. No one ever mentioned endo to me back then. In hindsight, if the doctors decided to take my appendix out back then, they might have discovered endo much earlier… :dunno:

:

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Dear Mumzword,
I know exactly how you feel, I found (what I think is) the best place in Sydney..Endo-Gynaecology at RHW, Randwick. Unfortunately there is not enough funding from the govt therefore if you are a public patient the waiting list is approx 12 months. After a few disasters from doctors in my area I decided that it was worth the wait. I had to have a hysterectomy; after waiting all that time I did the same things, the bowel prep was a pain in the neck but I didn't care...surgery at last! I too was bumped that day and I reacted the same way as you did... I burst into tears when the professor took the time to come and break the news to me personally. I think it's a pretty normal response so don't feel bad darling; the next time they put me on the top of the list and all went ahead and I am pain free. I wish you all the luck in the world.
Dear Kathryn,
I never thought to check it out at the time but the only symptoms I had were very painful periods when I was young; about a month or two after getting the Provera injection for contraception was when I experienced all the other endo symptoms. I can't help wondering if it was the injection that unmasked my symptoms. I ended up finding out that I had severe endo, cysts, polyps and adenomyosis. I still don't know what part the injection played but you may want to do some research before you try. My gyno put me onto the Provera tablets to stop my menses saying he preferred them rather than the injection but I didn't ask why. Good luck, I hope you stay healthy and never have to put up with the symptoms again.
Linda

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Thanks for sharing your story Linda, it was appreciated and its nice to know that I was not the first to react like this.... I just feel so bad for making the surgeon feel bad on the day.... not that I said anything nasty or anything but his secretary said he was upset to see how it had upset me and made me cry..... I feel like a real goose but its all the anticipation and build up of waiting and preping that does it too you..... did not help either that I wrote my will in the waiting room on the day which only heightened the stress and anticipation..... I know a silly thing to do and leave to the last moment... but I have never been able to bring myself to writing one before but when your faced with major surgery.... push comes to shove....

Thanks again for sharing it has brightened my day.....

Everyone else thanks for sharing your journeys too.... I know I really appreciate and enjoy hearing how you are all travelling.... its nice to hear about your small wins over the disease and what treatments your undertaking. Its an inspiration to talk to you all and it always helps to share the journey with someone who has walked a mile in your shoes.... Unless you have suffered from endo its really hard (this is from my experience) for people to understand what it means to cope with endo and its impact on your life.

Thanks for sharing all...... I hope you all continue to update on how your travelling as it is not only good to share a burden but you are also helping new endo suffers understand what to expect with treatments and what options are open to them and what symptoms are associated with the disease......

Wishing you all a wonderful week........

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

hi mumszword,
I know most of the women in this forum will probably agree with you, that sometimes you just have to have a cry.
My story, i'm 27 and haven't been diagnosed with endo yet, but my doctor thinks i have it. I've been TTC for 7 months and i have to wait another 6 months of TTC, before they will do the laproscopy to check. It makes me so mad that i have to wait, since i've had symptoms since i was 21, which include painful sex, painful bowel movements, and bowel pain (after sex, and during periods) that have got worse over the years. most times, fotunately i only need some panadol to help.Since coming off the pill in jan this yr, i also have painful, heavy periods, and back pain, I have a lot of pain during and after intercouse, especially around the bowel area that can last for a couple of days. I have been on waiting lists to see gynae's at hospitals and because i have no family history or no pain when they do the physical exam, i have been sent home to just use more lube. It's absolutely infuriating that a doctor let alone a gynaecologist's can think this is normal, and it can affect your life like this. As much as it's terrible that other women like yourselves, have endo, it's nice to know that we will get better, and can go on to have beautiful babies. some of you ladies are going through so much and i hope you all get answers/ get better soon.

Mines a long one and probably most are familiar with but here goes

Started TTC in 2003, after 6 months nothing happened had crazy cycles, so went to my GP and told a white lie said we had been TTC for 1 year and nothing.. sent to a fs in sydney, we were living on the mid north coast, and i refused to see the local guy, (Dr Death nic name) had all the tests and diagnosed with super super mild PCOS. Tried clomid for 6 months to no avail and periods became horrendously worse.. my husband liken my blood flow to that of a 'crime scene'. Told my fs who said it was probably clomid and he really 'didn't think i had endo'. We were given the option to have a lap/iui/ivf. He swayed us into the IVF path. On a pre IVF u/s my bladder showed to have a lesion on it, a day surgery procedure showed that i had a cyst in my bladder which was removed, but I still continued to have pain when passing urine after my periods, i was sure i had endometriosis. I had and got a very poor response with egg pick up for someone my age. FS then suggested after a negative outcome with ivf, and difficult epu that there must be some 'adhesions' in there. So I had a lap in November 2005, he basically went in and took one look and sewed me straight up. Pathologically I was way to hard for him to tackle so was referred onto the wonderful Dr Michael Cooper, of the ECCA centre in Sydney. After two major operations to remove endometriosis from both my bowel and bladder (yes it was on the bladder after all) I am now clear, however after 12 weeks away overseas i was experiencing excruitating pain on my left ovary, a recent u/s showed i had a endometrioma on my ovary. Two weeks ago Dr cooper removed it and it was a benign tumour. During this lap, he had a big look around and after nearly 15 months the endo still hasn't returned. FINALLY we have been given the all clear to TTC naturally!

Leis x

Have had a busy couple of weeks FIL was admitted to hospital three weeks ago with vision and speach and co-ordination problems. He was then diagnosed with a brain tumor - exploritory surgery found it was not cancer and started treatment. DH two weeks went to QLD to visit and was FIL was transfered to local hospital for rehab. Two days after transfer FIL died :( Very Sad. So I then made the trip with DD to QLD for the funeral and have only just got back... So sorry I have not been around for a while.

I am just wondering how everyone is currently traveling and if they have any updates they would like to share. I hope you are all well and that life is treating you all good.

I am definately scheduled for end of this Sept for surgery. I am a little aprehensive about it at the moment - endo wise I have been doing pretty well at the moment with only mild symptons that I have been taking pain killers for :D

Its funny that having lived with endo for so long you seem to just learn to ignore the pain and symptoms to a certain degree and that most non-endo suffers would ordinarily be layed up in bed with the same level of pain. Somehow,I seem to cope with a whole lot better... Its funny when a person or a doctor has asked me about my symptoms - its hard to explain and measure what is considered painful.... as one persons pain threshold to another is completely different..... I suppose I liken it to anyone who has gone without knowing they need glasses ..... its only when they have their eyes tested and are given perfect vision with glasses that they realise how bad their vision really was.... IYKWIM??? I was wondering if I am just odd or do other people who have had long term endo experienced this? I wonder if this is why it also took so long to get a diagnosis?

Well anyway, enough jaw flapping from me..... I just thought I would stop by and see how everyone was travelling .....

Thanks for everyone who has taken the time to share as I love hearing how you are all traveling and progress in TCC. I find it healing for the soul to have a shoulder to lean on and be able to share the road you are travelling.
Well hope your having a good week

Jo

Jo, so sorry to hear about your FIL.

I agree with learning to cope with pain from an early age. When people talk about child birth being painful, I think..."It's nothing compared to the pain I use to have every month" I dread the day that I am in a situation where i am asked to compare the pain to childbirth! Though it might give me some good drugs (if I was ever in a bad situation like that)

That's great news about your surgery. As of tomorrow, you can officially say "My surgery is THIS month" that sounds scary, even to me.

Nic

I don't suffer from endo but my wife does/did.

She was diagnosed with endometriosis in mid 2004. Was a shock when we were asked what our thoughts were about having children. We weren't married at the time. Were told we had 80% chance of naturally conceiving compared to 'normal' couple' by the gynaecologist. Had the laproscopy soon after that. Endo on both ovaries, ovaries stuck to bowels. I fainted from seeing the photos.

Got married in Feb 2006, tried unsuccessfully for 10 or 11 cycles until Dec 2006. Decided to go to an ECCA fertility/ivf specialist. He immediately booked us in for the 2nd laproscopy for March this year because our chances of natural conception was only a few % (yes, I was shocked as this was much lower than 80% as told by the gyno). Got my wife and I to get ovulation and sperm tests respectively. He said that if we didn't conceive for 6 months after the 2nd laproscopy, we should start thinking about IVF in September.

Well, my wife has reached 37 weeks in pregnancy last Friday and we are in the waiting game for 5 weeks. It was the cycle where my wife tested positive for ovulation that we conceived our little girl to be. Needless to say we cancelled the 2nd laproscopy and funny to think we could have started IVF this month but instead, we are expecting...

Hi, Im very new to this forum,
Im 31 Yrs old and never had troubles falling pregnant, apart from it taking at least 6mths of trying each time...When I was about 16 I had a laproscopy as I had bad period pain all the time, and they said they found I had Endometriosis, but only about stage 1 to 2....I have since had three babies, and breastfed for long as possible (2yrs) to avoid a period, however this time the period returned at 8wks post birth...I have never ben the one into using the pill, and the IUD was terrible....I just took a box of panadol each month up untill about 6 years when the panadol changed to codine, then morphine...I only use the codine at the moment because im still breastfeeding bub and morphine makes me sick....Im alergic to NSAIDS so cant use them. I have never been back to the doctors about the endo untill today , where i made an appointment to see the Gyno again...I dont know what he will want to do...Another Lapro maybe?....My periods are very painfull, especially in the back too and down the back of my legs...Im basically bed ridden when I get them, from pain and the from the pain relief....Over the last 6 mths tho I have been getting pain around ovulation time for about a week peaking on ovulation day, requiring a mild pain relief, I also have been getting Mid cycle bleeding as well..but worse of all im not terribly overweight (60kg) but my stomach is massive, I look about 6 mths pregnant, Im not exagerating either....Im not pregnant tho...Does this happen with Endo? Also what are the chances that the Endo may of got a lot worse and gone to stage 3 or 4 now? How can I tell? My ultrasound scans look fine...I see a Gyno tomorrow...

I have just read other posts and see something I also get...Every time I get a period I also get Diarreha, Ialwasys thought it was strange? Passing a stool during a period is also very painfull, and I also have a bladder problem where I have to go to the toilet very often as I can oly hold a small amount....(Also Prolapsed) But I wonder also if endo plays a role in this too, Along with the deppression i have had for past 9 years....Im reading hear about pain people get, I find it painfull, Like it unbearable not to get relief, sometimes Two Pandene Fortes dont help totally but I wouldnt say the pain was as bad as child birth, however the pain you get during the first hours of labour would easily compare...I find rocking helps too...I understand everbodies pain coping is different but I wonder how bad my pain really is??? Its like the doctor says to me "are your periods heavy"? well i dont know because I dont go and compare the amount of blood on my pad to my friends...whats normal? well maybe also I like to change my pad a lot more frquently than another would...Its hard to judge really, I dont think Im that heavy tho...Not like after you have a baby thats for sure...

i thought i would bump this thread and see how people are traveling?

during my last IVF cycle the FS found a spot of endo in/on one of my follicles but we have decided not to treat me for endo as i produced a few good eggs and the treatment may not work anyway or make any difference to the quality of the eggs. i personally believe the trauma of surgery to the ovaries takes more time to heal which i don't want to wait to happen.

how are you going?

A few months ago I thought my endo was starting to flare up again because it seemed my symptoms were returning...and then out of the blue I fell pregnant! Haven't noticed any trouble yet (apart from still having a cyst on my ovary) so hopefully the endo now stays away and hopefully my tube(s) remain clear enough in the future for baby number 2 (yes DP is already planning it!!).

Hi ladie
Just thought I would check in and see how everyone is.
Mumsword :How are going these days after your big opp??
I am going to have a Hysteroscopy/Laparoscopy with in the next 8 weeks, I am a bit worried as he is going to lazer some of the endo.
It is mainly to check if I have Ashermans Syndrome plus he will do what he can there also. So I expect to be very sore and sorry for myself afterwards.
But I hope it will help pain wise in the long run as I am always in pain its like having period pain all the time.:cry:

Have a Merry Christmas!!
Take Care
Chris

Chris, goodluck with your upcoming op, wishing you all the best with it.

Nic

Thanks Nic
I hope it all goes smoothly!!
Have a merry christmas Nic
cheers
Chris

hey chris, GL with your op and i hope you can get the pain relief you need. can i ask what is asherman's syndrome? xx

Hi Dusty
Ashermans Syndrome is damage in the uterus. It can happen after a C-section, D&C, or a infection in the uterus. There is all different grades of it from a few patches of scar tissue to the whold uterus being stuck together like a pancake. It can be very painful to no pain at all. If the uterus is blocked with ashermans and you have edometrial tissue in the uterus it can cause you to bleed internaly as when you have AF the blood has not exit so it goes out the tubes (I had this for 9 months) and this causes more endometriosis to grow.:(

I was diagnosed with endo 17 years ago and I had a m/c in 06 and had to have a D&C and got Ashermans.:cry:

During this op the Dr will try to cut away some of the minor Ashermans and he will treat some of the endo aswell. As these days I am in pain all the time.

I don't mind telling you what Ashermans plus if you google it you will get a better explanation of it and there is a write up about it in a UK paper that has a few case stories as well.

Merry christmas!!!

Chris

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Diagnosed: September 2006

Symptomatic since: Pain started 1999, was referred for painful periods put on the pill experienced minimal relief. Pains worsened as years went on and became more GI. Could not eat without pain, painful bowel movements, blood in stool in and out of ER for morpheine pain relief for severe stomach pain usually occuring after eating. Gas pains and bloating and period pain normally starting 2-3 days before period and had me doubled ove rthe entire time, alternating diarrohea and constiapation and fatigue.

Surgeries: 3 gatroscopies, 1 colonoscopy, 1 diagnostic lap & hysteroscopy September 06, Bowel resection (laparotomy) May 29th 07 and excision

Areas of endo found: small and large bowel, 40cm of small bowel removed, pouch of douglas, ovaries, tubes, bladder and appendix.

Fertility: No guarantess but Fingers crossed!!!

Treatments: Been on bc pill, currently on Synarel (GnRH)

Medical help: Been diagnosed by doctors for celiacs, lactose intolerance, ulcers, IBS appendicitis and in fact I had none of the above Go Figure!!! Damn doctors. Was in the ER 6 times in 6months for debilitating pain had to be carried in and put on morphiene, sent home being told i had gastroenteritits on all occasions. Finally Referred myself to a gynae who did my diagnostic lap in sept 06 which got the ball rolling.

Outlook now: am minus some bowel but my surgeons have said that my endo was so extensive and in the top 10 of the most complicated bowel surgeries they have performed. (at least they earned their money!) I am currently disease free Yay!!

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I can't believe it!
Everything you are explaining about the pain, the other diagnosis' is what I have been experiencing, I never thought it would also be related to Endo. I have been tested for ulcers, diagnosed with gastro, self diagnosed myself with lactose intolerance... and have almost constant nausea.
I have only been on here a day but I am learning so much from everyone.
But I haven't introduced my self... I am Cassie am 21 was diagnosed with Endo 1.5 years ago. Had a Laparoscopy & Hysterscopy the Endo was found where my appendix had been removed 10 years ago and under my uterus. Am now being treated with the pill having 3 monthly AF, but my "treatment" is causing more problems as now its causing my cervical cells to grow abnormally, so its back to the gyno on 31st Jan to have a colposcopy. Has anyone had a colposcopy? I have no idea what to expect?

Hi Chris :D

Just saw your message - sorry I have been a bit slack with checking my emails and the forum of late with christmas, new year etc....

I wish you all the very best with your op. I hope its sucessful and pain free and they are able to help with your symptoms... I will be thinking of you - let us know how it all goes.....

I am doing fairly well.... I have a few odd symptoms.... my bladder was involved with the endo and since they removed the endo I have some bladder related pain .... so I think I may have to follow this up?? I have had the occasional abdominal sharp pain but nothing that I can say that definately feels like endo IYKWIM? I am hoping they have got it all with surgery.... but as far as I know the only way they can check if it is re-occuring is to do surgery again? so I think I will play it by ear....

Well I hope everyone else is well and life is treating them good. Keep us posted on how you all are.....

take care and best wishes.....

Mumszword.

hello again,
Good to hear your doing well after surgery mumszword. just thought i'd give an update too.
I have another appoint with the gynae next month, and i have all fingers crossed i'll get somewhere this time round. I'ts been 13 months of ttc now so i'm hoping this will be a reason for them exploring what it could be (even though endo is suspected) cause i'm sore and getting depressed about all the pain all the time. Not to mention i can't bed that often due to the pain, so that might be a problem conceiving in itself (lol).
My only worry is my gp told me this gynae may want to refer me to another specialist in brisy cause no one where i live is qualified to remove endo, and i'm worried i'll be waiting even longer, but i'm being optomistic and well i guess i'll just have to wait and see..
Ok take care,
bo

hope everyone is doing well... was in hospital for a week about a month ago with a bowel obstruction which is apprently normal after such extensive bowel surgery... Grrrr it was absolute agony to the point that i told my surgeon i would rather die than have that again! he told me that if it didnt heal while i was in there they were going to have to do another bowel resection and i cried and cried.
the following day things started working again but slowly and after 7 days in tehre i was allowed to go home. it was good in that they were all the same nurses from when i was in there last time but hte pain was excruciating i was on so much pain relief i didnt even know my name half hte time.

Hi All

I was diagnosed with endo after a lap in June 07. I have always had painful periods but thought this was normal. In May 05 i started getting pelvic pain mid cycle. my gp sent me for an ultrasound which showed a retroverted uterus but he did not refer me on. I was finally referred to a gyno in May after seeing my (new) GP in tears with pain. At this stage we had been TTC for 6 months but i lied and told them it had been a year as i really wanted to get to the bottom of my probs. I saw the gyno who immediately suspected endo because of my symptoms - painful periods, pain with pooing, pain with intercourse. My surgery in june was basically open me up, see the extensive endo, and stitch me up again. My uterus was stuck to my bowel, ovaries and tubes stuck to my pelvic wall - to quote my specialist i had a 'real mccoy' case of severe endo. Finally 3 months later i had surgery again - this time with 2 gynos and a bowel specialist. The endo came off my bowel really easily so avoided a resection. had my appendix out and everything unstuck and endo removed. All 3 doctors said how happy they were with the surgery.

Started ivf a few weeks ago. Had my day 8 scan yesterday and found i had 5 follicles on my L ovary which are looking quite good. Unfortunately, the scan also showed a 4 cm endometrioma on the right side. I was fairly devastated by this since it is only 3 and a half months since the surgery. We are still going to concentrate on the getting pregnant asap thing and ignore the endo for now. The plan is to have a hysterectomy once i have (hopefully) had my children.

I am really realising that although endo is not life threatening, it is a really devastating disease as far as fertility, quality of life with all the pain etc. It feels like just as you get on top of it it strikes you down again. I am trying to forget about the endo now (with the help of panadol) and try and stay positive for the ivf. It is fantastic to hear about other people's success despite severe endo. It really gives me hope.

Hope you are all doing well.

I dont think ignoring it is a good idea. Choosing to 'wait and see' in regards to hormones and surgery is not the same as ignoring but.
I know a few people that have chosen a 'wait and see' how i went without them, and its worked where they are taking herbs, supplements, using exercise, relaxation techniques, and major diet changes. So if meds and surgery isnt the path you want to take, there is nothing wrong with that, many dont take that path, but you need to be doing something to help your body heal itself.

It varies so much from person to person. Its a risk not to do anything, i guess you need to weight up what matters to you.. Do some research on natural therapies, natural options and diet changes.

I have tried a change of diet which almost always brings great relief of symptoms, endo is an auto-immune disease so foods can often trigger discomfort or associated IBS symptoms.
I personally tried positive thinking, I know other people have also tried yoga and other gentle exercise, massage. Treating endo doesn't have to be all surgery and hormones.

from the extensive research i have done on endo and diet there is a belief that diet can minimise the symptoms of endo and improve overall health.
the endo diet mainfly focuses on recipes which are wheat free, meat free, dairy free, sugar free, and soy free. im not as strict in my diet in cutting out all the above but i do make a concious effort too as before my surgery the above foods definitley aggrivated my symptoms.

Thought I'd give a quick update on here too.

My son is now 4 months old, growing very fast and doing great. I'm enjoying being a mum but it doesn't leave much spare time to come on here anymore but I do often think of you ladies and wonder how you are going.

On the endo front - it is slowly creeping back, ATM I have at least one day a week with moderate pain. There has been a few nights where I have been feeding hamish and doubled over in pain thinking to myself, it use to be hard enough to cope with the pain before bubs came along - if it gets back to the constant 24/7 pain again, I honestly don't know what I'll do.

Good Luck to all awaiting surgery and TTC and congrats to those who have fallen pg since I was on last.

This is the best endo support online IMO !!

Hi Mumszword
Yep i agree better get bladder related pain checked out. As for the other sharp pains could it be adheasions that are pulling as I had that kind of pain after a lap and was told that it could be an adbeasion. After a few months it went away so I didn't worry about it, just thought it had stretched and adjusted.

Due to the constant pain I now wait for postman to see if he has letter from hosp telling me the date of opp. I just want this pain to end. I feel so useless as if I do a bit of house work it gets worse from the bending etc .... sorry a little bit of wow is me :( :boohoo:

Joel's girl : IKWUM as after both of my babies I was OK for a few months and then it started up again getting worse every month. Plus if you are breast feeding it could be the uterus tightening / cramping. I was not able to breastfeed for very long but after birth pains were worse when feeding baby(during and after feed).

Take care
Chris

I've only posted here a few times so I'll provide a little history :)

I'm 23, had period paid since I was 15 and was diagnosed with endo at 22. My periods were very irregular, anywhere from 3-8 weeks apart, were heavy and lasted for up to 7 days.

I had lap surgery in november 2006 although the surgeon was not a specialist. in the 6 months after the surgery, my periods were regular. For the last 6 months they have been 35 days apart, and last for around 5 days.

My main issue since surgery has been the pain - whilst it reduced the days of pain during my period, i have more constant 'general' abdominal pain throughout the month and far more severe pain during 2 days of my period. I have had digestive problems (bloating/constipation/abdominal and bowel pain), dizziness, headachesand lethargy since the surgery.

I became sexually active recently (an unrelated past experience caused me to distrust men but my current partner is wonderful). While I have been somewhat dealing with the period pain by pretending it will go away :redface:, the pain during sex in the bowel/rear area (i'm sure you understand!) is frustrating to say the least.

I'm now searching for a decent doctor to see if all symptoms are related and if there's anything more that can be done :)

Hi desist
If you are looking for endo specialists in brisbane, try Graham Tronc at Brisbane Private Hospital.
Very through and understanding. Absolute champ

post same as above

:wall:

This is my first post one the website and i have no idea where to start with my situation!

Im 25 and was diagnosed with PCOS at 16 and put on the Diane pill. When I was 22 I was diagnosed with Endo and a retroverted and retroflexed uterus after years of pain. My symptoms were painful sex, pain during bowel movements, general pain etc etc where do we stop! After a very painful surgery to fix my uterus and remove my endo things started to get slightly better then went downhill from there again when I was 24 I went back into hospital to remove my endo but there was none there. After a follow up with my gyno she explained that in my case the nerve endings from where my endo was removed previously are sending signals to my brain that the endo is still there so i still feel the pain. I have been on several treatments since. There has been Amytriptalline if thats how you spell it there were two different dosage levels at different times, I have been on tegratol which left me feeling nauseated and tired all the time. I just finished that and still has made no improvement. My gyno has suggested the next step to be Zoladex but im really scared about it. I have appt on the 11/2/08 and I have a lot of thinking to do before I do it!
Im finding it all too overwhelming, noone understands what its like to live with endo except you guys so I was so excited to stumble accross this forum!

I don't even want to think about my chances to have children with both my issues but im holding out hope.

Re Dr Tronc recommendations - thankyou, I have just booked an appt with him and came online to check his rep. Glad to know that he is recommended, I thought he would be considering he's an ECCA surgeon - he'd bloody well want to be good for the price ;-)

Hi girls
Just wondering how every one is....
Well I have good news - I am pregnant!
This is going to a very high risk pregnancy due to the Ashermans's Syndrome.
I am also in alot of pain.
Has anyone here had bad pain while pregnant. As I think the pain is from the endo but can't be sure.
My endo is in the pouch of douglas/front and back of uterus and on the bowel (well that is what I was told after a lap 10 yrs ago).

Take care
Chris

Hi Chris
I think I read some of your posts in the IVF section???
I also have great news - I will be 8 weeks pregnant this friday after my first IVF cycle.

I have been having terrible pain too. I have a 5cm endometrioma on my right ovary and it is mainly that that is causing the pain i think. I had a laparoscopy end of september to remove stage 4 endo and the endometrioma has grown back since. My endo was around the bowel, in the pouch of douglas, on the uterus,tubes and ovaries (they were stuck to the pelvic wall with adhesions. My pain now is mainly on the right side but sometimes up my bum too. The pain scares me a bit - when it is really bad I worry that something is going wrong with the pregnancy. I have had three scans so far to check on things. The doctor thinks the pain is just the endo. If I wasn't pregnant I would have to have another (my 3rd) laparoscopy but the pregnancy is the most important thing now so I just have to put up with the pain.I have seen the heartbeat too which was really amazing (this is my first pregnancy). I really hope that everything goes well for both of us.
How many weeks are you Chris?

Let me know how you are feeling

Jayne