Fertility Friends Support Forum banner
1 - 17 of 17 Posts

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #1 ·
Hi,

Just wanting some of your opinions and hoping to hear positive stories. 

I was put on the menopause meds from Feb - May to treat suspected endometriosis.  Come May, we had the option of just going for ivf or getting tested again to see if it's cleared up with the meds.  Since the endo is severe is my case, we opted to get retested.  So this invovled waiting for AF (which didn't come until end of May...even with provera), then going through a special mock cycle that my clinic does (basically putting me on meds / injections for FET but instead of doing a transfer, they do a biopsy and test for implantation issues).  The test results take 4-6 weeks to get back.  My biopsy is scheduled for June 17th, so I should be getting results around July 17th. 

Yesteday I called to book a follow up appt to get the results and start the next process (hopefully ivf if results are ok), but I was informed that my dr is away for the month of July and the next available appt is Aug 14th! Thiat's insane as that s a whole month after we should be seen.  It's particularly frustrating  ^tantrum^ as we've been with this clinic since Nov, and each appt involves waiting 3 months (some of it for treatment). 

My concern is, that by our appointment, it'll be 3 months since I've been off the menopause meds.  Thus, I'm really worried that the endometriosis will just come back by the time we get to ivf.  Does it take longer to return or are my concers valid?  The last thing I want is to get to ivff but my dr recommends that i go back on the menopause meds for 3 months.
 

·
Premium Member
Joined
·
17,093 Posts
Hi

Sorry, you mention you're endo is severe but I can't remember, have you actually had a laparoscopy to check within your pelvic cavity for active endo ?  Although there are tests that can be carried out to give an indication of endo, the best way is to have a laparoscopy because then they get to see what's active, what's burnt old patches (I don't mean burnt from treatment, endo can burn itself out), whether you have adhesions, what organs any endo and adhesions are effecting......tests (and even scans) can't show this unless you have especially large active patches of endo.

Some women do have aggressive endo where it can come back quicker than "average" but yours would have to be extremely active and aggressive to come back and cause issues within a matter of months....not unheard of but certainly not common.

I have severe (stage 4) endo which has been confirmed through many laparoscopies but mines not that aggressive as it seems to come back around 2-3 years following surgical removal.

I'm sure you'll be fine but obviously you'd need to discuss it with your consultant & I'd wait to see what your biopsy shows up.

Take care
Natasha
 

·
Registered
Joined
·
186 Posts
hi honey  :)

i agree with natasha about the lapro, its the best way to determine the severity of the endo.

in my own case my endo is also stage 4 and i had a full excision of all the affected tissue last may, but having had another lapro on wednesday my endo had already come back. i know that the doc thinks mine is quite aggressive but having said that it did take a good year so in terms of your treatment try not to get too anxious, (i know its easier said than done)  ^hugme^

i would double check with your clinic the situation of waiting to see the cons as its unacceptable for them to just expect you to wait as he's going on holiday. i know that we all need to make allowances for others incl the docs but this is your health and thats paramount in this situation.

try not to worry, if it was me i would give them a call and explain why you're so concerned to wait, and just see if there's anything they can do.

let us know how you get on

love and  ^hugme^

joxx
 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #4 ·
HI,

Minxy, to answer your question, no I have not had a laparoscopy.  I've had past abdominal surgeries and it's a risk to my digestive health to do one, and thus my dr is avoiding it if possible. (HOwever, if current test results come back bad, then we may have to think about doing that option).  My clinic (in Canda) is in a special research study with the States where they test for implantation issues. Mine came back showing major issues and suspected reason is endometriosis.  That's actualy quite comforting that it can take years to come back.  Sorry it'scome back at all though.  Thanks for your wisehs.  Good luck to you.

joxx, so sorry taht in your case, it came back.  You had your last lap May 07 or 08?  Good luck with Wed's surgery.  Hope its easy for you and you get that BFP.  I'll definitley exprses my concerns to my doctor when I see him in a week for the biopsy.
 

·
Registered
Joined
·
186 Posts
hi  :)

i had my major op may 07 and just had another lapro june 4th so it was a good year's difference. i'm sorry to hear that you have additional abdo/digestive problems i imagine that, that in itself is hard enough without all these additional worries.

i wish you lots of luck when you speak to your doc, i think that an open conversation is really important between you and them.

if you ever fancy a chat you know where i am

love and  ^hugme^
joxx
 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #6 ·
Thanks Joxx.  Yeah..had colitis years agoo and I think it's the surgeries that caused scar tissue causing my intiial feritlity issues .  Now, other stuff is going on.  Ok..so it took a year for yours to return.  I'm so sorry tghough that you had to go through another lap.  Hope this is agood year for you.
 

·
Registered
Joined
·
186 Posts
:)

yeah fingers crossed it should be a good year, i'm getting married in august so maybe i'll be lucky and get a honeymoon baby.

i totally sympathise about the colitis as i had a friend at work who was very poorly with that and i know its very difficult to live with, i just hope that you will be able to get yourself as well as poss so that you'll be a mum asap.

the lapro went well on wednesday and whilst i'm pretty uncomfortable at least i know that i'm endo free for the time being, i don't know whether you know this but the chances of becoming pg following a lapro are greatly increased so whilst in your case it might not be possible i think that the possiblites from it might be worth chatting through with the doc.

love and  ^hugme^
joxx
 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #8 ·
That's so exciting that you're getting married soon.  Congrats!  May good things happen for you and your dh2b. 

I actually had colitis as a teenager and it was not fun.  Had my colon removed and organs reconstructed (3 surgeries), but I think scar tissue was left behind stopping me from getting pregnant.  (but since the organ is gone, so is the disease).  Our first ivf did work 3 years ago and we have an amazing 3 year old, but have since had issues (4 failures last year). 

That's very encouraging that after a lap, your chances of conceiving are greatly increased.  Do you have plans to have tx? 

Hope you are healing well and the worst of the lap is behind you.
I'll be crossign my fingers for you.
 

·
Registered
Joined
·
186 Posts
hi  :)

we are thinking about treatment at a later date we want ttc naturally first and see if we get lucky. the consultant has discussed ivf etc but for the time being its just not the right time.

joxx
 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #10 ·
Hope it happens naturally for you and dh.  Your chances are much higher since you just had a lap.  I'll be crossing my fingers for you.
 

·
Registered
Joined
·
4,185 Posts
Hi,I think your worries are very justified. Endo can regrow quickly after either removal by an op or after meds ie Zoladex. I would try and get seen before if possible ?! good luck!  I have aggressive endo so i know how quickly it does come back, and from what i have seen (being on various endo boards for the past 5 years) in general the majority of ladies do get it regrowing fairly quicky  ::)

Jo - good luck for Wed!! xx
 

·
Premium Member
Joined
·
17,093 Posts
jocole69 said:
Hi,I think your worries are very justified. Endo can regrow quickly after either removal by an op or after meds ie Zoladex. I would try and get seen before if possible ?! good luck! I have aggressive endo so i know how quickly it does come back, and from what i have seen (being on various endo boards for the past 5 years) in general the majority of ladies do get it regrowing fairly quicky ::)

Jo - good luck for Wed!! xx
Sorry to say I have to disagree I'm afraid. I know your (Jo) endo is pretty aggressive and has been known to come back within about 5/6 months....but this is not the "norm". The majority of ladies do not have excessively aggressive endo....I too have been member of many endo boards for over 10 years now (and diagnosed since first lap 20 years ago) and having read the forum boards and info on the internet, it seems that aggressive endo is not as common.....and most women will find endo returning in a matter of years as opposed to a matter of months. It really depends on how active your endo is, where the active endo is and how well it responds to the hormone/surgical treatments you've had....without having a laparoscopy it may be more difficult to determine this.

Obviously none of us are medically qualified though so ideally you should discuss your concerns with your consultant.

Good luck
Natasha
 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #13 ·
Minxy, thanks for clarrifying, that it's only a small percentage that have regrowth so quickly.

Jocole, so sorry that you have such an aggressive one.  Your little one is georgous.
 

·
Registered
Joined
·
186 Posts
hi girls,

i agree with minxy too, i was told mine was an unusual case and that i've just been unlucky, i'm sorry i hope i didn't unduly worry you as i would never intentionally do that,

i'm now changing my diet and seeing a homeopathic doc to try and get this a little less on the agressive side, to be honest in my case i just want to feel better firstly and secondly increase my chances of conception.


i know that the lapro is a little more tricky for you ready4family and therefore you need to be, i think even more specific with the doc as to the way he's gonna try and help you.

hope you are all well

love joxx




 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #15 ·
Thanks Joxx.  I'm sorry to hear that you're one of the unlucky ones.  Let's just hope that your recent lap has done the trick.  I try to eat a bit less wheat and dairy, but do find it hard as they're almost my staples (esp since I don't eat meat).  How strict are you with that?  Do you follow all the "rules"? 

It's actually my dr that said he doesn't want to do laparascopic surgery on me unless necessary.  And even if our current tests come back with issues again, he'll send me to a speicalized surgeon to see if it's even possible. He won't even do it in my case...and he's a well known fertility dr.

Thanks..hope all is well with you too.  I'll be crossign my fingers for you.
 

·
Registered
Joined
·
186 Posts
hi,  :)

the diet is hard as i don't really eat alot of meat either, (i'm not veggie but i find that especially red meat upsets my digestion) so i find that cheese is my main protein, as well as milk for calcium. i'm trying to cut down on wheat by not really eating bread or refined things like lots of cakes and biscuits, this helps me worry less about getting into my wedding dress as well  ;D

i think that whilst i am interested in helping out my endo i aiso want my body to be in good health for pregnancy and my cons did recommend that i try and have as balanced a diet as poss in order for that to happen. in fact he specialises in endo surgery and treatment and was not that happy in me cutting wheat and dairy completely. i know it depends on who you speak to but i think part of the problem with all these things is that each person has their own bias and therfore trying to find the best solution for you is the hardest but most important thing.

the consultant has already discussed a hysterectomy as the final solution,  :( but he wants me to have the opportunity to have at least one child first and as i'm only 28 he feels that another few years trying would be best first, which i agree with.

i hope that in your case a solution might be reached where invasive surery is not called for as i think you've already had enough to last a lifetime and i wouldn't want you to go through anymore pain and discomfort than necessary.

thanks for all your well wishes i really appreciate them they really give me so much positive energy

love and  ^hugme^
jo xx
 

·
Registered
Joined
·
5,661 Posts
Discussion Starter · #17 ·
Hey there again,

It's funny that you mention that it depends on who you ask since when I asked my fertility dr about what to avoid or eat, he said wheat and dairy are totally fine as long as it's whole wheat and not processed.  Strangely, he said to have red meat once a week (which I always thoguht was a complete no no).  Like you, I'm just cutting down on sweets (and I have a bad sweet tooth so it isn't easy).  I laughed at how you have two motivations.  :)

But I'm with you, and just try and have a balanced diet.  I've been eating more fish than I used to (for omega 3s) and cutting out soy (which I miss). 

I pray for you that it doesn't come down to a hysteroctomy and I'm glad to hear that your dr is on your side and knows that you want to have children before doing something so drastic. You're still so young.  It'll happen.

Thanks so much for your kind words.  PM me anytime.  I'm here whenever you need support.
 
1 - 17 of 17 Posts
Top