Endo and TTC chat

[2Pink4Me]

Hi everyone!

Yay a whole new section :thumbsup:.

I thought it might be nice to start a thread for endo sufferers who are TTC.

I'm Sarah and I had endo diagnosed when I was 18. I have a 2 year old who was conceived straight away after having an implanon removed but I have been TTC #2 for nearly 6 months (7 cycles).

Anyway, I hope that we can start a nice new chat thread cos it's a rotten thing to have and I think all of us need as much support as we can get!

:wave: and I look forward to chatting to someone soon LOL! It feels weird to write to people who I don't quite know are out there yet :laughing:

[dreamtobeamummy]

Hi there sarah :wave:

I am 21 (22 this year) and was diagnosed with endo along with pcos (about 18 cysts on one ovary and 20 on the other) about 18 or so mths ago, I had a laproschopy done almost 12 months ago.

We are TTC and have been since December. I am currently 9 days late for AF :fingerscrossed: i will get a positive soon as ive done 2 tests that are negative so far!!!

[2Pink4Me]

Hi Eliza :wave:! Yay for being 9 days late! How exciting!!! Wow! Is AF usually late?

:fingerscrossed: definately for you!

[dreamtobeamummy]

the latest my AF has ever been is usually by a day or 2 at the latest. I have had nausea, tiredness, some cramping, bloating, headaches, always going to the toilet, tonight ive started getting sore and itchy boobs.. i would of thought that was enough symptoms except ive had 2 negatives, so ill go it out for another few days and do another one see how i go!! It seems promising so far! :o

[2Pink4Me]

It does seem really promising. :babydust2: and :fingerscrossed: for you!

Keep us updated :goodvibes:

I have to go to bed before my eyes fall out of my head LOL!

Have a good night.

[dreamtobeamummy]

yep i am heading to bed too. I was falling asleep at 730 :laughing:!! talk soon

[bellbells]

Hi Sarah,
I had my first lot of endo removed in oct 2003 and within weeks we fell with baby 1. we thought we would wait a couple of years to give him a brother or sister and after a MC in Nov 06 we got checked again for endo and yes it had returned so back to the operating room for me. so Nov 07 it was removed again and we were so excited about TTC again all healthy. But 6 months on we still have no luck. Im finding it quite draining to stay positive. Im now getting monthly blood tests to see if i am ovulating or not.

[KatiesMum]

Hi girls.

I am not ttc anymore, but certainly have been there and done that - and with endo it just makes it a bit tougher.

After ttc for 4 yrs with no luck, I was dx with endo and had my first lap in May 05. I fell pregnant 3 months later (much to the amazement of my FS as I had substantial scarring and tubal blockages).

We decided to ttc again when DD was 6 months old as we were aware it might take a while, and sadly after 8 months still no joy .... so I had a 2nd lap in August 07. Unfortunately we werent as lucky the second time around, and I was due to start IVF in February when I was dx with Leukaemia. I have to take various drugs for that which arent safe in pregnancy, so have to be satisfied with just the bubs that we have .....

But all in all - I have a pretty good understanding of some of what you are going through.

Many :hugs:
Julie

[2Pink4Me]

Hi everyone

Eliza any news? Has AF or a BFP arrived :goodvibes:?

Bellbells :wave: You are new here? Hang around, it's so addictive! Your story sounds similar to mine. It's hard hey? I thought the 2nd lap I had in Feb was supposed to improve my chances :rolleyes:. Grrr

Julie hi too. I was new when I saw all the horrible stuff you were going through. I remember it though. Cos I was such a newbie I didn't know what to say but I spose I can say :hugs:now. OMG what you are/were going through is horrendous and you must be such a strong and brave person. All the very best to you. I can't even imagine.

Well this thread is quiet :(. I was hoping more people would jump on and say hi. If anyone is out there :D

Have a good day everyone

[dreamtobeamummy]

Ill just quickly reply, Because I have to head to work very soon :laughing:

Done 3 tests last week all with BFN :( but i still dont have AF so im now 13 days late for it. I have more and more symptoms... *mmm chicken flavoured crinkle cut chips* :laughing: and my DF has had cravings too, I call them sympathy cravings :p So ill be booking into the doctor this week to arrange a BT!

[2Pink4Me]

Wow 13 days late! I can't believe all of your tests were BFNs :confused:. Hopefully you get some answers soon though.

:laughing: about your and your DHs cravings. Mine were salt and vinegar chips and nesquick in all the flavours!

Good luck for you :goodvibes: . Keep us posted!

[KatiesMum]

:fingerscrossed: for you Eliza

Mum2moo - thanks. Was pretty awful for a while, but I am doing much better now :p

[dreamtobeamummy]

Well AF decided to show her ugly head yesterday afternoon it so far seems to be similar to my last month without the pain etc. I have to go to the docs on the weekend anyway to get the last shot of cervical cancer injection so Ill question him then.

So i guess its our month over when we really did think it was our turn :no: oh there is always next month :D :D

[2Pink4Me]

Oh Eliza :hugs: that sux. Yep there is next month. You'll get there. I am heading into testing territory and I am not feeling that positive about it so I am pretty sure AF is just around the corner. I have had really bad pain even though I had my lap in Feb so I am also off to dr tomorrow to talk to her about TTC and my endo.

[Ys_Woman]

Hello ladies..sorry to crash your thread but I really need to ask a question or two.
*A bit of background*:

My eldest daughter was diagnosed with endo three years ago. She went for her first pap smear at that time and the results came back CIN3 which we were told was borderline cancer.
They were going to scrape away a large section of her cervix and at her request, do some keyhole exploration for endo at that time. She had been telling our gp for many years that she believed she had it and wanted a referral to a gyno but our gp wasn't convinced..neither was the emergency room when we would front up there:hair:. Kept saying it was pre menstrual syndrome.
Anyways..she had her cone biopsy and they did the laproscopic procedure only to discover more endo than you can poke a stick at. The surgeon even filmed it and showed us..whoa! He blasted out as much as he could at the time but her ovaries and all around the pelvis,bowel,bladder etc are covered and are layers deep..and even now has it on her cervix.
They gave her a drug that puts the body into menopause which helped her no end. Unfortunately you can only take it for six months due to side effects like osteoporosis.
She has been having checkups twice yearly for the past three years and things have become progressively worse for her pain wise. Nothing takes away the pain, not even Oxycontin.
Her surgeon did say that having a baby could relieve her of the endo but she doesn't want to have a baby at her age (21) and she worried that if she did she would likely end up with a baby AND the endo..and she couldn't cope with a baby when she is in that much pain.
She is seeing her surgeon shortly and I have suggested she have another surgery but she feels that it would be a waste of time. She has given up.
Has anyone here had repeated surgeries?
Would it help her in any way to keep having them?

Hugs from a worried mum.

[KatiesMum]

I dont have much experience with this severe endo.

Mine was classed as severe ... but mostly had formed a massive ovarian cyst which was (relatively) easily removed. I do have scarring and damage to 1 ovary and 1 tube, but other organs are not damaged.

I have researched a reasonable amount about endo though - and from my research can say that I would think the surgeries would certainly help. In each surgery they scrape away the endo tissue that they can see/access, seperate the organs that are joined via endo tissue, untangle/scrape the intestines and generally correct any adhesions that they can.

If your daughter is finding her endo returning so regularly, then yes barring other issues should have the lap regularly to try and clear it regularly.

How many lap's has she had? (they can only diagnose and treat via a lap so 'checkups' can only talk about symptoms and guess ....

SOMETIMES pregnancy results in the endo either not returning or returning less severely (in my case it did come back, though not as severely) but sometimes it is just as bad as before.

Sorry - Im probably not much help.

Good luck and many :hugs: for her

[Ys_Woman]

Thank you Julie. I am trying to convince her but she is so depressed by it all. She started saying she doesn't even care to have her pap smear but with the endo now on the cervix she has to as it can turn cancerous.
I hate this problem. It is robbing her of a life. She can't sustain work, is in awful pain, and finding it difficult to keep a relationship going (hasn't told her current boyfriend exactly what her problem is). She gets so bad at times that you cannot even physically touch her. She can't speak or think when the pain is bad.
Sorry for the vent..just wish there was something I could do.
Thanks again for listening.
Amy:)

[dreamtobeamummy]

I dont have much experience with this severe endo.

Mine was classed as severe ... but mostly had formed a massive ovarian cyst which was (relatively) easily removed. I do have scarring and damage to 1 ovary and 1 tube, but other organs are not damaged.

I have researched a reasonable amount about endo though - and from my research can say that I would think the surgeries would certainly help. In each surgery they scrape away the endo tissue that they can see/access, seperate the organs that are joined via endo tissue, untangle/scrape the intestines and generally correct any adhesions that they can.

If your daughter is finding her endo returning so regularly, then yes barring other issues should have the lap regularly to try and clear it regularly.

How many lap's has she had? (they can only diagnose and treat via a lap so 'checkups' can only talk about symptoms and guess ....

SOMETIMES pregnancy results in the endo either not returning or returning less severely (in my case it did come back, though not as severely) but sometimes it is just as bad as before.

Sorry - Im probably not much help.

Good luck and many :hugs: for her

:iagree: with what you have said. only SOMETIMES can pregnancy help the endo and thats basically because you are not bleeding. Endo feeds off of the blood, the other option is if she asks her GP or Gyno in regards to going on the pill but skipping her AF's and only having one every few months, this will help with the pain obviously because you are not bleeding as much. woman these days are not meant to have as many AF's as we do, hence why there is so much more endo 'recognized' now then what there would of been back many years ago.

I would reccomend her having Laps as it does help, i was completely riddled with endo and my Gyno had not seen a case like that for many years, I basically now have no pain compared to twelve months ago. And going to have checkups is not going to fix the problem, as she needs to get it cleaned out to be able to fix the problem, as PP mentioned Endo is only diagnosed with a lap, if your going to the GP or gyno to have check ups, its just a guessing game.

Hope this helps and good luck to you and your daughter :hugs: :hugs: :hugs:

Liza xxx

[Ys_Woman]

Thanks for that Liza..you are her age so you would understand what she is going through. Being in chronic pain for a number of weeks every month is not much of a life for a young one.
She sees her surgeon/specialist every six months to look at pain strategies (nothing works) and keep an eye on her cervix. Funny thing: they put a dye on it and then called all the interns/residents etc in to have a look as apparently it was beautiful...lol..dd1 was not impressed with the audience.
All the surgeon has said to her was that he could never remove all the endo because it is 'cell layers deep'..but a g/f of mine who has had many lap surgeries for endo, and four children, says if you don't get it done regularly it becomes stickier (?). Don't know if that is true or not but hoping it scares dd1 into having it done.
Specialist said he switched to ob/gyn stuff 35 years ago when he first learned about endo. He thought he could make a difference. I hope they have a breakthrough soon.

Amy:)

[KatiesMum]

lol at the audience .... is not exactly intimate!!!

just to clarify - its not that it becomes stickier so to speak if its not cleared, but as Eliza said, endo does tend to feed off blood (while that isnt technically correct, it is in reality what tends to happen) the longer you leave it be the worse it gets.

The endometrial tissue that grows outside the uterus in the pelvic cavity disperses blood each month, and builds up each month the same as the endo tissue lining the uterus, but with no-where to go, the tissue and blood in your pelvic cavity forms cysts and forms a spider-web like tissue on the outside of various organs. This can then join organs together, pull them out of shape/position, tangle them up (especially the intestines) and impair organ function.

That is why it needs to be cleared as often as possible in a case that severe ... the ramifications of not doing it mean that it will only get worse......

Sorry for the bad news.

The good news is, if she has the surgery and they successfully clear a majority of the tissue, the pain etc will often substantially subside - at least for a while.

[bellebabe]

Hi Sarah,

Thanks for starting this thread!
I'm new to all this - have been reading everyone's stories - its good to know that you not the only one going through tough times.

I was dx with endo at 17 and have had numerous laps since. I have had the endo cut out and lasered and even went on 12 mths of Zoladex (menopause) to kill off the endo. This helped me the most and touch wood my endo has been manageable ever since.

My biggest problem is that I have been on the pill for 14 years (due to terrible periods associated with the endo). I have come off the bcp 2 months ago and have not had a period or O'd since. :no: I am now starting to get really worried. I am seeing a chinese acupuncturist who thinks it could take me several months or even a year for cycle to return to normal. This is not good as we are tring to TTC!

I am also taking Vitex & Maca Root (at this point I will try anything to get my cycle going)

Has anyone else been in this situation? Would love to hear some other stories.

Thanks! :yelclap:

Me 29 :valentine: DH 31

[Ys_Woman]

Hello Bellebabe..it was interesting reading what you have done for the endo over the years. I think I have almost convinced dd to have another surgery but she is adamant only if they put her back on the Zoladex. I will tell her that you got it for 12mths..her surgeon wouldn't allow her more than 6 due to the osteoporosis risk. She took loads of calcium while on it though. It was the only thing that helped her in a sustained way.
Wish I could help with advice about your AF but I have no clue. I did take something called False Unicorn a few months b4 I fell pg with my 5mth old son. I went to the naturopath as I had a m/c in 2006. I wanted something to heal the uterus so she gave me the False Unicorn in a tonic form.
I took it for three months til Dec 06 and then fell pg in Mar 07. Can't say if it was the tonic..but when I rang to tell the naturopath I was pg she advised that she was too..and she had been taking the same tonic..lol.
Don't know if that is the answer for you but maybe just seeing a naturopath could be a help.

[Hopeful 08]

Hi all

I have a few queries about Endo.. I was diagnosed with PCO in September 2006 and they checked for Endo at that time and reported back that there was none. However I am convinced that I do.

I've been reading some of the comments on the Endo threads and like some ladies i end up having severe pain with my AF - to the point where my poor hubby has to watch me roll around on the floor in agony and he can't talk to me or touch me to give me comfort. It also causes sickness and other bathroom related problems. I did have a chocolate cyst removed in 2003 but during my scans for TTC there are no signs of them lately and I'm not overly excited about the possibility of having another laporoscopy as I ended up off work for 2 weeks.:hair: What to do... Docs all think since i was told in late 2006 that it wasn't there that it wouldn't be there now. But I've had these serious AF problems with pain etc since my first AF at 13. Also have pain during BD. Sometimes so bad I faint!

Any advise would be muchly appreciated.

[KatiesMum]

Hi :wave:

I mentioned a few things in the other thread ... but in relation to your situation, I would probably suggest that you do have another lap.

I had my first lap in May 2005 ... had severe endo, large fibroids etc (and the lap was HORRIBLE, I had a severe reaction to it).

I had some scarring and my tubes werent the best, so was told I would need IVF to conceive. (Had been ttc for 4 yrs up till then).

I did 3 months of cycle tracking...no drugs, and was due to start IVF the following month. I fell pregnant naturally on the 3rd month of cycle tracking.

I had another lap in August 07 (so slightly over 2 yrs later....had a preg in between when no endo grows) and the endo had substantially returned.

Sadly I didnt conceive miraculously or anything, and have since discovered other issues so I cant do IVF or have another bub

BUT - the second lap was a walk in the park. Honestly it was sooooo different from the first (which was worse than my c/s) ....

Tell your FS and your aneasth of the problems last time and hopefully it can be better for you.

Endo can return or develop quite quickly, so if you think that its a strong possibility, then I would have another lap.

Good luck

[Hopeful 08]

I'll have a serious sit down with DH and go over this all again today - we have an appointment with FS tomorrow morning. As I already know I have PCO we're trying IUI so I'll have a chat with him in the morning and see what his opinion is.

Thanks for your response tho. The support on here has been amazing help to me and DH. :wave:

[Hope08]

Hi everyone

I have been reading everyones stories and I of course sympathise with all as I too have been diagnosed with stage 4 endo about 2½ years ago (am 33 now). I had surgery 2 years ago to "clear out" my endo, tubes blocked and ovaries stuck together!!! Yuk! But have the feeling I may have to have another surgery again soon as the pain is getting bad again. Also, I have been ttc since Dec 2006. Have had two IVF attempts which of course both failed but would like to try again bit am scared as worried it will fail again and it is soooooooo upsetting when it does.:crying:

[branjie]

Hope08 I really feel for you. When I did IVF I was terrified of how I would react if it didn't work. The counsellor helped to get me in the right frame of mind, so it was a positive step to go see her. I was lucky with IVF, but I think you could be too. I think you should go back to where you did the IVF and keep going. When it happens, it will be worth it. In the mean time, try and keep in mind that it is possible to be happy without kids. I had a plan that if IVF didn't work, we were going to go on a holiday (something which is a major drama and not relaxing with kids). It helps to have something like a holiday to look forward to. I changed jobs as well which helped me to get out of my depression, and took my mind of my infertility to a certain extent. I'll have my fingers crossed for you that your baby isn't too much further away.

[MEKISS]

Hi Ladies

I haven't been diagnosed with Endo as yet but my FS said there is a strong possibility that I do have it. From what I've read on the net I have the classic symptoms. My next appointment with him is in 2 weeks where we will discuss have a lap & hysteroscopy performed.

I am just feeling really low atm I found out yesterday that my SIL is pregnant & due early Feb. It just seems so unfair that it has hasn't happened for us as yet. Especially as she is the type of person where everything is a competition & she always has to go one bigger & better. I know I'll feel better once I see my FS but I'm allowed to feel like this aren't I?