Endo specialist or IVF? Desperate to have a child.

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?

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.

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.

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.

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

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.

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.

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.

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

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 :)

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

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"

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

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. :lol:

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

Bris Vegas I am a fellow brissie Gla have just had my endo cleaned out by my FS he is very open to natural support therapies let me know if you would like his details. PS after laps IVF is not that bad so I have found. Just need to be realistic with it and what you do.

So sorry to hear of your MC but do understand that it gives you hope.

Thanks TiggerLinda,

I would love to know the name of your FS. Referrals are always good. I will need to suss one out soon-ish, so that would be great.

Fingers crossed for your next round.

Dr Das at City IVF he and the team are wonderful.

Dr Das at City IVF he and the team are wonderful.

Dr Das at City IVF he and the team are wonderful.

Hi everyone,
I had endo removed three years ago since then I had three miscarriages (spontaneous pregnancy) my progesterone level is too low it doesn?t support the pregnancy. I am not a good responder to IVF treatment , I would like to know if anyone has the same problem.

Cival,

Sweet there a a few of us that get low numbers great Assitaed conception threads for lost of q's

Hi everyone

I thought you might be interested in hearing about my recent experience with IVF.

My endo background - I have had three laprosc surgeries for endo in the last five years - I get severe endo with adhesions and choc cysts (like others it took over 10 years to get a diagnosis so the endo - and its damage - was very advanced). I also have food allergies and intolerances, plus interstitial cystitis caused by the endo damage and stress to my system.

Before I began my first IVF cycle all of the specialists acknowledged my endo was on the increase but more surgery was never discussed, I proceeded straight to the IVF drugs. This involved taking a drug called puregon that causes the follicles to grow on your ovaries, It is also not a great drug for endo patients to take - it is like fertiliser for weeds.

A week after I stopped taking the puregon and about five days after the embryo transfer I was in increasing pain, nauseas and vomitting. This got significantly worse over the following week. To the point I was so toxic that the embryo had no chance of surviving - as I was later told by the specialist. My endo is now back with a vengence spurred on by the fertility drugs - all of the debilitating symptoms are back and I am dreading my next period. I am booked in for surgery at the end of the month for another clean out - thankfully I have a great endo specialist who specialises in surgical removal and this works (atleast in the short/medium term) for me. I don't respond to drugs.

I now wish I had had the surgery before I went thru the IVF cycle. I would have got more eggs and the embryo would have had a better chance of implanting. I feel frustrated and saddened that I wasted a good quality embryo on my dodgy system. The IVF process wasn't horrible but it was exhausting. I have one embryo on ice and I want to give it its best chance.

So my advice is get treated for the endo before commencing with IVF to give yourself the best chance of success. Also try alternative therapies - accupuncture prior to and during IVF is being promoted as being very beneficial. Plus it can ease endo symptoms.

Also don't be afraid to get a second opinion on treatment. My first endo specialist did a half hearted surgery (didn't even suggest getting my damaged appendix removed) and prescribed drugs. I got a second opinion and it was the best thing I ever did. I can criticise the disease but not my treatment.

I wish you all the best.

Clover

HI Brisvegas - ive just been reading ur thread andi feel for you - a severe endo suferer myself. I have 3 major operations in a span of 18 months and was told to try adn fall preggers ASAP naturally even though they knew i couldnt. Put it this way i was in hospital at one stage for almost 3 weeks - it was bad. After my last operations last Feb 07 my GYN/OB placed me on synarel which bascially puts u into menapause - to be honest it was good apart from the hot flushes lol.... anyway this drug is also the starting process of IVF which i had to do. After being on this drug for 3 months i started IVF - its not than bad u just had to go in there with an open mind and no expectations (which is hard). It was especially difficult for my husband and myself as we lost a best friend to cancer (just b4 his 30th), i started a new job as did my husband. You do what u have to and its all an experience and what u make of it. I was very lucky though i fell preggers straight away, no complications throughout the pregnancy and have a beautiful 2 month old Joshua. I wish you all the best - lucky ur naturalpath remedies are working for u - it didnt for me nor did chinese medicine. If ur still trying to source a doctor - Dr Peter Illingsworth from IVF Australia Sydney is also very good. I actually went through Westmead hospital in Sydney which costed me nothing...but it is all expensive. Good luck i hope you get ur bundle of joy u deserve.

Hi Ladies,

Thank you thank you thank you for sharing your stories and all of the support you are giving me and others who visit this thread. I was so dubious about these types of forums, but since being on them have felt so much better about it all. I think just knowing you are not alone helps so much. Also just talking about it.

I am coming into the 3rd month of my course of chinese herbs and acupuncture. Firstly I have to say that anything to do with herbs must be given at least 3 months to work and be followed diligently if you want to see any results at all.

I saw marginal results for the first 2 months, in fact a return of symptoms to an extent which got me down. On the 3rd month I am starting to feel hopeful. My BBT is starting to look normal, and I am ovulating strongly. My mucous has increased and the pain is lessening. I may not fall pregnant naturally after this, but at least I will be in a much better position for IVF should we need to go down that path.

Some of the herbs I am taking cause miscarriage, so for that reason we have had to stop trying for a while, but my practitioner tells me that we are just about ready to start trying naturally again, based on the results. I see him weekly and he tailors the herbs and acupuncture accordingly, based on my symptoms, time of cycle and BBT.

I've also been off wheat (about 90% of the time) for 3 months now and am less bloated and feel better in myself overall. So perhaps there is some kind of link to allergies/food intolerances and endo. However I have realised that my biggest issue is with stress in general and managing stress. The anti-stress herbs I have had to take are the ones that have had the best effect on everything - including my progesterone levels. So I've had to admit that to myself and work to find other ways to alleviate the stress and my response to stress. I believe that endo breeds on stress. I have been also doing a course of hypnotherapy to help with managing stress and am getting some good results.

Stay tuned. I feel so positive right now, but we all go through those down times with this terrible affliction. It's like riding a wave.

Best wishes to all of you who are undergoing treatment or about to. My thoughts are with you. Will you keep us all posted on how you get on?

Big hugs xxxxxxxxx

Hello, everyone

This is Tiffiny, i just have laparoscopy to remove my endometriosis (moderate) by Dr Molloy in QFG, and i thought my realistic pregnant rate should be normal after the surgery, whlie Dr still recommend me to IUI two months after the surgery, is there anyone who has been conceived naturally after laparoscopy? i am 29 years old and my husband is the same age with me and his sperm count/ motility is good but percentage of abnormal sperm is a little bit higher than normal. we have been trying to conceive for more than one year.


Thanks for your reply

Hi again,

Well it has been almost 4 months on the chinese herbs and acupuncture. Was getting good results in terms of period symptoms decreasing and my progesterone levels increasing. Until this last cycle.

I had a particularly stressful 2 weeks at work, was also going for another job, my parents were up visiting and we were trying to fall pregnant for the first time naturally in months. Well the stress was too much for me and guess what - I got severe endo symptoms again. Abdominal pain, IBS symptoms, nausea etc etc. I know it's come back.

Now I feel despressed as I amy have wasted 4 months doing the natural thing when I could have gone down the IVF route instead. I feel like I am back to square one again.

I want to go and see an OB/Gyno, but not sure if IVF is worth trying straight away or perhaps another clean out (10 months since my last one). God I hate those clean outs!!!

Hope you are all well. Does anyone have any good news of late regarding their endo and fertility treatment? I'd love to hear it.

xxxxxxxxxxxxx

Hi BrisVegas

I am sorry to hear that all is not well - hang in there. Don't think of them as 4 wasted months - you tried something less intrusive than the options western medicine offered and you did get some relief from your symptoms. Keep moving forwards.

My last couple of months also haven't exactly gone to plan. I ended up in severe pain and non-stop vomitting a few days after my last post and got carted off to the emergency room. They pumped me full of narcotics and fluids, 24 hours later I had the surgery - it was all over my bladder, bowel, tubes etc etc.

The surgeon has recommended that I have a hysterectomy...but this doesn't exactly go with my IVF plans! I was a bit freaked about this option when it was first mentioned but now I see it as a good option for twelve or so months time. Given my period is a huge problem for me, apparently a hysterectomy will improve my general health and quality of life.

But for now I am back in the IVF grind. I started ASAP after the surgery and will have the egg pick up and transfer next week. I don't get great results as one ovary no longer functions and the other is slow. So I am hoping for two eggs next week (had a scan today to show this) - I am booked for a double embryo transfer. Fortunately my eggs seem to be good (so far) and quality seems to be more important than quantity.

This cycle is also going much better health wise since the surgery. I have been tired but not ill - fingers crossed that I stay this way.

Good luck with what ever path you decide to follow. I will let you know how I get on - hopefully it is some good news!

Hugs

Clover

Bris Vegas sweetie have a good chat with the FS they will know what to do mine suggested 2 stims b4 we cleaned out again

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?

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.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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.

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

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.

xxxxxxxxxxxxxxx

Update:
We have had 6 eggs at pick up and 5 fertilise over night hoping 6 times lucky:dance:

Julie Lindstrom is at my Clinic at City IVF heard she is very good the team are fantsatic there

:bluedust: for us all

Hi everyone

Tiggerlinda - have you had your ET yet?I am sending you baby dust and sticky vibes :bluedust::stickyvibesgirl:

Brisvegas - how are you feeling? Nausea and vomitting is one of my big symptoms so my thought are with you!

Writing this has just reminded me of a diagnosis that hugely improved my pain symptoms and nausea about 18 months ago - it is the norm in my daily routine so I don't give it much thought. I was getting a painful spasm in my belly - it caused vomitting and at its worse I started to go grey and black out particularly after I ate (my poor Mum was with me when it first happened). It took about 6 months to be diagnosed as interstitial cystis due to the damage the endo had doen to the outer muscle of my bladder. The solution was quite simple - 10mg of Endep (neurological inhibitor - stops pain messages getting to my brain) and 20-40mg Nexium (reflux meds) every night. I felt better within weeks - if I stop the meds i have nausea/vomitting when I have my AF.

There is a down side - weight gain - but hey I generally feel a lot better. Apparently endep is given to anorexic patients as it helps with weight gain - I found this out later.

Oh - Brisvegas - keep in mind that IVF costs are medicare costs not private health fund (well not mine anyway). The good news is that your first cycle will result in you hitting the medicare threshold and once there you get 80% of your out of pocket costs back. At my clinic you pay the medicare gap up front (about $2200) then at the end of your cycle they send you the tax invoice you use to claim the 80% from medicare. So this cycle has cost me about $450 plus about $110 for a drug. The medicare threshold is per calender year - so if you need more than one cycle you want them in the same calender year to reduce costs. I hope this helps with the $ thoughts.

Yes I have rambled on - trying to keep busy and not think about the 2ww - stick stick stick baby(s)!!

Hugs Clover

Clover good luck with the TWW
Yes we have had transfer 2 embies