Endo specialist or IVF? Desperate to have a child.

[Mindhugs]

Hi there,

This is my first time on here, and I feel relieved that I've found somewhere to discuss my condition with other sufferers.

I had surgery in Sep 07 to resect a septum in my uterus. Dr Livingston (Sydney) had an endo specialist on standby in case they found any whilst in there. Well they did, and over the couse of an hour removed it from my left ovary, under my uterus and on the RHS wall of my abdomen. I'm not sure they got it all to be honest.

Since surgery I have been getting increased ovulation pain, and in particular on that RHS of my abdomen. My period cramps remain as painful as ever. However my digestion is shocking and I am often bloated and cramped lower front and lower back.

My husband and I have been desparately trying to conceive for 18 months, and Dr Livingstone says to go naturally for 6 months following the surgery and if no success then to consider IVF, which sounds quite traumatic in itself. I also have the option of going to an Endo specialist.

My tummy gets very swollen from Ovulation to period. Worse than it ever used to.

We don't know which way to turn, but want to make the right decision. I'm in my mid 30's and husband is in his early 40's, so we feel we are racing against the clock and don't want to waste time in case we need to consider adoption instead, which is a long and emotional road.

Is anyone in the same boat as me, or had a similar experience to this?

[anney]

Brisvegas,
I am not an endo sufferer but it sounds like the surgery didn't really help you much . What does Dr Livingston specialise in? I am guessing he is a gynae? is that correct?
If you go to the IVF websites and look at the doctor profiles, they will list their areas of interest and some of them will list Endo as their area of interest. If I were you I would go to one of those. they will be able to give you a feel for whether someone with your level of endo is likely to conceive naturally or will need IVF. Hopefully their are some sydney girls who can help you out with some names.
good luck.

[Mindhugs]

Thanks Anney,

I should've added that I have moved to Brisbane now. Dr Livingston is one of the best infertility specialists in Sydney, which is how we ended up with him. And the surgeon he had assisting him (in case they found any endo, which they did) supposedly specialises in endo surgery.

Just not sure where to from here, since I think there is still some inside me somewhere, but they assured me it was removed from my repro organs. I'd be happy to go straight into trying IVF if my chances were ok with that. Otherwise I guess I'll have to explore further treatment of my endo with a specialist here in Brisvegas.

Decisions, decisions. Meanwhile the pain, when it comes, doesn't get any better.

[mummy2Kaitlyn]

Hi ,

I had a similar situation .My fertility specialist did a Lapo/hysto to see what was going on as we have been trying for 11mths with no luck. When he went in he found endo and one blocked tub from the scaring of the endo (apparently). After the op he told me that with the single tub + endo that I needed to go to fertility rate was so low in his mind it was not worth waiting any longer. Anyway by a miracle we feel pregnant the cycle after my operation!!!!!!.

We have now been trying for our second child for 15mths so I have booked myself in for another clean up. He offered me the option of IVF as he does this as well , but I thought it all sounded so traumatic.

I am not sure why you are suffering more pain, my was very much reduced, especially during "the fun stuff!". Have you spoken to your Dr?.

I am happy to give you the name of my Fertility Specialist as he was great. He worked first time and I am hoping he will again.

[melanie1964]

Hi,
the naturopath I see says there appears to be a link between wheat and endometriosis and advised I stop eating it. Now I no longer have bloating or irritable bowel symptoms or diarrhoea, which I used to suffer during every period. Obviously this may be different for everyone but cutting out wheat has had a massive impact on my endometriosis and the pain was reduced noticeably. After my last laparoscopy the consultant gynae said my endo had 'burnt itself out'.

Maybe worth seeing a naturopath also to prepare your body for ivf ?

Good luck
Mel

[Mindhugs]

Thanks guys for your responses and support.

Strangely enough, my naturopath told me the other day she thinks I have an intolerance to something and she is suspecting salicylates. So I have eliminated those from my diet. The bloating gets me too and also the diarrhoea around period time...........

I've heard endo is linked to weakened immune systems (ie. asthma, sinusitis, hayfever suffers etc etc) which would explain the food intolerances.

My mother in law had endo and then a hysterectomy. Now she suffers from Fibromyalgia. She also has allergies/intolerances to certain foods. She's in her mid 60's so the technology that's around these days is a lot better than back then.

[sam_layle]

I'm turning 36yrs in a few months & my DH will be 39yrs shortly after. We have been trying for 3 years. I have endo & have a very low rate to conceive naturally, I think my endo/ivf specialist said I have under a 10% chance. He also said I should go straight to ivf & skip surgery. I feel that I should have surgery first to get cleaned out then start ivf.

Your not alone. Good luck.

[Willow]

Coming from someone who's BTDT, can I just offer some advice and say that IVF is not that traumatic! After two laps, (one to remove endo, the second to remove adhesions from the first surgery) I found it was a walk in the park by comparison.

If time is not on your side, I'd go straight to IVF.

[neane]

Hey Brisvegas, it sounds like you and your DH have been through a lot together, look this is going to sound a bit out there but you and DH could look into Sharky's Healing Centre which is in Brisbane i think,
they use natural herbs to help with infertility by balancing the body out and i do believe they could help to settle down that bloating and pain your getting which sounds pretty awful. You never know you may not need to do IVF, They also work in conjunction with IVF, my DH and I are looking into it as well. Figured it couldn't hurt and it is heaps cheaper than doing a full IVF cylce. Good luck cheers neane

[Hollybolly]

Bris Vegas,

As someone who has been there too, I would say do the 6 months of trying, but definately with some natural herbs and acupuncture... then move on to IVF.

Would definately be worth looking into an IVF clinic and FS now, as it takes a while to get started with blood tests, sperm samples, etc...

I would keep trying naturally whilst you did all of this and then decide on a cycle if you haven't fallen pg in the meantime.

Look into the LTTTC &AC thread and ask about FS in your area - there are girls in there from all over

I would definately recommend the acupuncture if you're not already doing it - I had tremendous relief from my endo pain, period pain & ovulation pain by going regularly

Good Luck

[beau_9]

hi bris vegas,
i'm in a similar situation. I'm 28, my fiance 30. i havn't been diagnosed with endo but my gynae suspects it, and we have been TTC for 14 months unsuccesfully.
He asked us whether having a baby was number 1 importance and yes it is to us, so we're going through fertility testing next week (a hsp procedure and sperm analysis) but in my mind i would love to find out if i do in fact have endo and have a cause of the pain.
But he says due to our ages (makes us sound old, ha ha) he wants to explore the fertility side of it because endo is only suspected and he said he could remove it but it may not remove the pain.
I've read lots of posts of women who've had their endo investigated and removed and helped in pregnancy, so it's a little hard to just go straight to the fertility side of things when i too am in a lot of pain each month.
anyway i've been told to go to accupunture and take a range of herbs, vitamins from a naturopath and they we're unbelievably helpful so i do recommend seeing one.
good luck

[desist]

Hi Brisvegas,

This is my reply to another thread - I will be getting another lap done within a few months (depending on my savings as this guy isn't cheap). Surgeon is an endo and fertility specialist so he knows his stuff... I can let you know how it goes if you like.

Good luck


"I had endo burnt off in november '06, and have deteriorated since. Pain during AF has increased in severity, although this 'bad' pain now lasts only 2 days instead of 3.

General abdo and back pain throughout my cycle is also more prominent since the lap, along with digestive problems similar to IBS.

I have an appt with an endo specialist on 4 March to (hopefully) find out what's going on"

----------------------------------------------------

[Mindhugs]

Update:

Hi Everyone and thank you again for all of your support and guidance. It's been great.

We had a miscarriage a few weeks ago, which was sad. It's my 2nd in 2 years. Although it wasn't pleasant it did give me some hope again.

I have found a really great natural therapist who specialises in acupuncture and chinese herbs. He has had great success with infertile women and I can just tell how good he is by the close attention he has taken to my case. I see him weekly and he adjusts my herbs and acupuncture depending on the time of my cycle I am in and what my BBT looks like. I'm already getting results with regard to my endo symptoms. Less pain during periods and my moods seem to have improved. I don't feel as low. PMT is more balanced too. But I do hate those needles in my abdomen. It's as if I can feel them in my uterus sometimes.

My husband has also agreed to receive treatment from this therapist so that we can both make sure we are in the best possible position to fall, whether it be naturally or IVF.

I took all of my results to show the therapist and he says he can see that my progesterone levels and BBT are too low for me to conceive. So we are working on that as well as the endo, and see how it all goes.

Fingers crossed. I must admit that I had gotten myself to a stage where I just wanted to give up and had lost a lot of hope. We've been at it for almost 2 years now and you just get so tired of the emotions involved with it. We had begun to look into overseas adoption. This has made me feel more positive again - regardless of the outcome.

Hope you are all well and having a great week. I will keep you all in my prayers and thoughts.

[hannah6666]

Hi

I am about to start an IVF cycle with ICSI and am in Perth (Fertility Specialisits of WA in Claremont). I was wondering if anyone had any experiences to share about the clinic or just in general.

Also does anyone recommend taking time off work during the whole thing or staying at work.

Also interested in seeing if people told their families before starting IVF?

[Mindhugs]

Hi Clover and Tiggerlinda,

Thank you so much for your replies ;-)

Dear Clover - my goodness! My thoughts and hopes are with you. Never give up on the dream. You truly are a special person to go through all that you have.

My sister in law gave birth to a beautiful baby girl today. The first grandchild in my husbands family. I try so hard to be upbeat, supportive and happy in these instances, although it is just so hard. Particularly when you hear that they fell on the first go. Is there a god? Really?

I do find that the toughest part of being an endo sufferer trying to fall pregnant, being so positive and happy for those who fall so easily. And shouldering the dreams and disappointments of both my husband and I. Seeing the disappointment on my husbands face each month when it still isn't happening sometimes crushes me more.

We keep the faith and soldier on another cycle in the hopes that this might just be the one!

Thank you all so much for your support. This forum helps me more than you know.

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[Clover]

Hi Brisvegas - I have good news - I had two eggs picked up yesterday and this morning was told that both have fertilised. Yay!!! I am having both transferred tomorrow (Yes twins freak me out, but two is better than none).

Hopefully the surgical clean out I had gives me a good chance of one of the embryos sticking. The 2ww begins tomorrow.

Have you decided what path you are going to follow?

Hannah - Good luck with your cycle. I have worked full time during my ICSI cycle, taking time off only for the EPU and ET. I have been very tired so social activities have stopped. I told my friends and family so they understood what I was going thru. However if my job was stressful I would have taken more leave.

[tiggerlinda]

Clover :goodluck2: hopefully this is it and no more need for another cycle

[Mindhugs]

Oh Clover - that is all really positive. I am so hoping that it all works out for you. How fantastic.

Tiggerlinda - let us all know how you get on too.

I have been getting tests done to figure out why I am getting nasty reflux and nausea for the past 3 weeks. Getting the camera down the throat on Wednesday (groan). At least it can rule out any nasty's or other complications.

Have also booked into see Dr Lindstrom in Brissy. Can't get in until late August. She deals with both infertility and IVF.

We are putting off buying a house until we figure out how much this little journey to have a baby will cost us.........

Have a nice, relaxing weekend everybody. I'm sending you lots of pink energy to fill you full of positive energy.

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