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

[Mumszword]

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.... 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??

[Laranna]

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.

[Kylie B]

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! 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!

[dusty]

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 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

[Astrolady]

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

[Angelwings11]

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

[nic]

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

[YDI]

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!!

[dusty]

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

[Laranna]

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…

[Mumszword]

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

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....."

[beau_9]

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.

[firemansgirl]

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

[Mumszword]

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

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

[nic]

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

[noisuf]

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...

[rosebush]

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...

[rosebush]

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...