Endometriosis Rant

My efforts to remain calm are in vain.

I am scared ****less about my lap on Friday. I keep thinking about how naive I was when I used to say "Mum had endometrosis really bad but I seem to have escaped it". :wall:

Why me? Why now? This year my focus has been learning as much as I can before TTC. In February I experienced that primal instinct that only a woman can identify with. That feeling of "I'm ready to be Mum - NOW". Since then that feeling has completely and utterly consumed me. It's this urge that is making my diagnosis so much harder to deal with.

The worst pain I am experiencing is on my left ovary. The doctor also said it could be adhesions on my tubes. Why my ovary and tubes?? Why couldn't it just be on my bladder or my bowel or something completely unrelated to where my precious eggs come from?

DH has been amazing - putting up with my tears every time I am in pain. Every cramp/stab/twitch is accompanied by a feeling of impending doom. My Mum has been wonderful - although her endometriosis was so bad she was told she would probably never fall pregnant, she still ended up with my Brother and I before she had a hystorectomy. She keeps reminding me of this. Could mine be as bad as hers?

I hate where I am and I just want it all to be over. I hate the uncertainty and I hate not knowing what the outcome is going to be. I need answers and I wish I was going in this afternoon instead of having to wait until Friday.

Amy - this week will drag but it will fly - and before you know it, you'll have answers. it's understandable that you'd be stressing big time - everything about what you have believed of yourself and your fertility potentially hinges on this one op

BUT - this doesn't define you, it doesn't determine whether you will or won't be a mum. it's just another hurdle you will have to jump to be able to get there. FWIW, i've had intense pain on my right ovary almost all the time for the past 18 months. i've had so many scans both during and apart from AC cycles. i've had a lap - and there is nothing wrong with that ovary (well, pcos, but nothing like endo), so it's not all doom and gloom for you. i honestly thought my ovary was knackered, and that i'd have no chance of conceiving from that side. my Gremlin is from that ovary. pain isn't fun at all, but it doesn't mean all is lost

keep a couple of things in mind - you're 23 years old, which means 23 years of technology has evolved since your mum's issues. laps are now "run of the mill" in treating endo. there are meds you can take prior to ttc to reduce the endo build up (nic was on synarel for three months before her pg to control sheet endo). endo is now lasered during surgery, rather than cut off, so better for scar tissue build up (i believe).

and there is technology that is more readily available in reporductive technology. it's not ideal to have no option but to go through IVF, but hun, it's not the end of the world. 23 years ago, IVF would have been unattainable for your average person, but now, it's really common, easily accessible (even for country bumpkins like me) and medicare DO help with some of the expense. this is something you have contemplated already due to genetic issues, don't discount it for help to get around endo if that is what is discovered on Friday.

take care hun - not long now til you get some answers - and from there, you can plan your next steps, whatever they may be

BG

Hugs Amy :comfort:
You're not being naive at all!
Having a lap when you suspect endo is pretty scary. The good thing is you are having the lap, and will have some definate answers as to what is going on, and where to from here.

My mum had endo too. hers was bad enough for her to collapse at home early one morning, rushed to the little local hospital, then to another one 2 hours away. when they saw the endo, they dianosed it as cancer and told her she had a few months to live at most! Eventually they figured out it was endo, and she ended up with a complete hysterectomy and double colostomy for about 6 months I think?

That was 20 years ago, BG is right, techonology has advanced so much since then. My mum has what she calls 'train tracks' all over her body from her ops. She checked out my tiny cuts from my lap and said they look so much better than her tracks lol! They really are so tiny, I can't even notice the one in my belly button and it's only been just over 12 months since my lap.

There are a few stories on the endo forums here of BB girls getting pregnant after being told they had endo and it wouldn't happen.

I'll be thinking of you on Friday, and hope you receive some good news :)

Nic

:hug: Amy, I am thinking of you and completely understand what you are going through hun. When I went for my lap I had never even heard of endometriosis and when the doctor told me it was severe and I would never be able to fall pregnant naturally, I was absolutely crushed. It was the hardest thing I've ever had to deal with. In my situation my tubes were completely blocked up (hence why no natural conception), my left ovary was attached to my bowel and my left tube has a kink in it. There were more adhesions riddled throughout my pelvis and over my uterus. An IVF specialist told me my chances of conceiving were about 30%.

Against all the odds, I fell pregnant naturally with DS 2.5 years after my endo diagnosis and there are still times I am in disbelief that it happened.

Anyway, I don't know if that's any comfort but I want you to keep positive and know you have the support of all of us here on BB.

Huge hugs.. :hug:

Thanks BG, nic and Laranna. :hug:

I just can't get past the "what if's" and it's driving me INSANE. I have had to stay composed for the last week dealing with work cr@p and today, now that all of that seems to have subsided, I am so teary and emotional. It's like now that I can actually start dealing with it - I'm not coping at all.

I'm trying to keep busy but my mind is just stuck in this crazy place. How will I make it to Friday? :crying:

Awwww hun :hug: I was thinking about you just this morning actually. When you saw Dr A, did he tell you what the next course of action was for treatment once you have the lap? Did he tell you what type of medication (if any that is) he was doing to put you on? When he did my first lap in 99, I went straight onto Duphaston and it was barely 6mths later that I conceived my first child accidentally - so all is not lost - it IS possible to not have any trouble conceiving when you have endo. And I can totally understand where you are coming from about not getting a diagnoses till your age - I was 22 and I was even told by other doctors that I'd actually had early miscarriages on the two times I presented to A&E with the pain and heavy bleeding - you can imagine how that made me feel! It took ages to find a Dr that took my concerns seriously.

You will be fine on Friday and you WILL be a mum, I have no doubt.

He hasn't talked about any medication as at this stage it is just an investigation to see how bad the endometriosis is. The only thing he has said is he wants me to go off my current pill and onto another (I've decided on my own I don't want to go back on it full stop).

He asked me when we were hoping to start a family and I told him sometime next year. He said he would put a plan in place where my condition was monitored until that time came. I guess by that he means some sort of medication?

As soon as I told him my symptoms (I had them written down) he immediately suspected endo and booked me straight in for a lap. My previous GYN (Dr H) told me it must just be a bad case of thrush, gave me some cream and sent me on my merry way. 6 months later I was still in agony. So I am thankful for Dr A. He certainly doesn't muck around.

I know I will be a mum - my life just wouldn't be complete if I wasn't. I will find a way - even if it is IVF. It's just the shock I guess... I never thought I would have to go through this.

Oh Amy, :comfort: I've been reading your other thread, and you have had a crap time the last week.
I just wanted to say that, try not to get too caught up in the what if's, if possible. They will send you crazy!
What if you hadn't the courage to seek out a new Dr to find answers for your pain? You would still be sitting here in pain, and wondering about so much. You are being positive, and moving forward by seeking answers and your Dr is helping you with that plan of attack, whatever it is or will be!
Try not to be too hard on yourself sweetie, and tell your DH to give you some pampering.

Nic

Yep, he sure doesn't muck around - I didn't even have to tell him much and he said we'd do another one because he had my file out already. The pill he might want you to take could be as simple as another birth control pill with a different hormone balance, or it could be a more specific medication like the Duphaston, which still gives you a regular 28day cycle, which is a progestrogen. But there are different paths you can take depending on what he finds on Friday. When I have mine on 5/12, I'm having a Mirena put in because it works in a similar way to the Duphaston.

I'm feeling a bit calmer today.

I had a blow-up with my PHI yesterday which sent me out of control. I was hysterical and the phone operator wore it!! Apparently there was a "glitch" in their system and my membership status was still listed as "pending". They recognised it was their error and assured me it would be fixed by Friday. I was so upset thinking "What else is going to go wrong this week?". Fingers crossed it all gets sorted.

I had a big chat and cuddle with DH last night and we talked about everything. I'm so lucky to have such a great, understanding man who supports me and loves me unconditionally. The poor man has had minimal sex this year due to this stupid endo and I very much look forward to having a pain-free, enjoyable, intimate relationship with him again. He's such a champ.

I'm ringing the hospital tomorrow to get my surgery time. I'm hoping it will be in the morning so I don't have to fast all day.

In the meantime I am getting everything tied up at work as I will be away all of next week and I have heaps of deadlines. Someone is covering for me so I just need to tidy up my office and put everything into organised folders.

I'll be glad when I finish work tomorrow and I can solely focus on Friday.

I can't tell you how much I appreciate the support I have recieved here on BB. You are all amazing :hug:

Hi Amy,

I just wanted to add to the words of encouragement already posted. Surgeons now are amazing and endo is something that can be treated and managed so well now.

I had my lap 5 years ago and they discovered severe & extensive endo: everything stuck to everything else and a cyst the size of a tennis ball in my right ovary.

We are now TTC and I had an ultrasound to check my tubes were clear. They were unblocked and both ovaries were sound and producing follicles! I thought the severity of my endo would mean I would have lots of problems TTC, but it looks like it hasn't come back much since my lap.

:

---

My efforts to remain calm are in vain.

I am scared ****less about my lap on Friday. I keep thinking about how naive I was when I used to say "Mum had endometrosis really bad but I seem to have escaped it". :wall:

Why me? Why now? This year my focus has been learning as much as I can before TTC. In February I experienced that primal instinct that only a woman can identify with. That feeling of "I'm ready to be Mum - NOW". Since then that feeling has completely and utterly consumed me. It's this urge that is making my diagnosis so much harder to deal with.

The worst pain I am experiencing is on my left ovary. The doctor also said it could be adhesions on my tubes. Why my ovary and tubes?? Why couldn't it just be on my bladder or my bowel or something completely unrelated to where my precious eggs come from?

DH has been amazing - putting up with my tears every time I am in pain. Every cramp/stab/twitch is accompanied by a feeling of impending doom. My Mum has been wonderful - although her endometriosis was so bad she was told she would probably never fall pregnant, she still ended up with my Brother and I before she had a hystorectomy. She keeps reminding me of this. Could mine be as bad as hers?

I hate where I am and I just want it all to be over. I hate the uncertainty and I hate not knowing what the outcome is going to be. I need answers and I wish I was going in this afternoon instead of having to wait until Friday.

---

Hi Amy,

I am new to this website.... I am getting married in Jan 09. I am 37 years old and live in Sydney. I feel your frustration. I had my first lap surgery in Jan 08 and have not really been right since :( I AM DESPERATE!! to have a baby and am scared that my time is running out..... How did everything work out for you?

Hey Amy, just wanted to say good luck for Friday!! Hope it all goes well. Try not to think too much about the "what-ifs", I know it's hard but often the "what-ifs" never eventuate, so really you'll have just been stressing over nothing. But I am a hypocrite...I can't stop thinking of what-ifs...trying to just go with the flow but it's hard not to think about different scenarios!

Good luck :goodluck:

hi amy
my name is ashleigh i am 19 and i only found out a couple of months ago that i had endo. i had been on the public waiting list for nearly two years as i wasnt seen to be a priority patient. the build up to the lap was scary but once i was in there i just wanted to get it over and done with.

the worst part of the lap (i think) is what is known as referral pain. it is this pain in your shoulder, that kind of feels like you cant breath. it is really normal and is cause by the gas they use to inflate your stomach. if you drink plenty of water the gas escapes in your urine.
i found this to be one of the things i wasnt told about so i thought you might like a heads up.

i was kept in over night because of how extensive my endo was. i was discharged the next morning and fine by the following day. just a little sore.

MY BIG PIECE OF ADVICE- i dont know what the private health system is like but if they tell you how extensive it is and how you wont be able to have kids... wait to speak to your doc. i was told that if i had any chance of concieving to go home and try. i was devestated to say the least. but 3 months later i spoke to my doc who straighten everything out. DP and i have decided that uni (for me) can wait and will start ttc later this month.

i just thought i would give some advice as i know how scared you are at this point in time.

good luck and stay positive.
ashli xoxo

Amy, Hope all went well today.

Thanks Nic :hug:

Had a rough time in reovery and nearly had to spend the night but I ended up getting well enough to come home after 5 hours in recovery.

Feeling very sore and sorry for myself today :( DH is being beautiful and looking after me so I'm nice and comfy and just focussing on getting better.

I won't know more until next week but I did hear the nurse say to another nurse in recovery "she's had quite a bit done". Hopefully that means they got it all out.

Thanks to you all for your support :hug:

:hug: just take it easy today and do nothing - order in takeaway for dinner and eat out of the box if it means less work for you to do. Fingers crossed you get great news when you see Dr A again.

Hope you are recovered and feeling much better soon, Amy.

:hug: Amy, I hope you feel better soon.

SG
xo

hey amy
hope you feel better today :hug:

i had to stay overnight because i had so much done and i thought the worst.
i went to see my doc and it wasnt nearly as bad as i expected.

goodluck i know the wait is hard
ashli
xoxo