Endometriosis Support Buddies

[jules87]

Hello Socks and welcome to the group! I'm sorry that you have heard the dreaded "some peoples periods are just like that" response. I wish doctors understood how upsetting that phrase can be!

At least here you are not on your own. We completely understand that heavy and painful periods are not normal! The best bit of advise I can give is to track your cycle, I use an app called Glow. Also, don't give up. Keep bugging the doctor about it.

If the doctor suspects endo, they will most likely do a laparoscopy. If they see any endo while doing the laparoscopy they usually take care of it all in the same procedure.

There is another disease much like endometriosis, but it is inside the uterus. It is called adenomyosis.

Anyway, just keep after the doctor. It took years for them to diagnose me. Good luck!

 

[still hopping]

Welcome to the group Socks!!

I totally agree with Jules that you should keep pushing for the doctor to refer you to a laparoscopy for diagnosis and removal... most endo can't be detected through scans. I have suffered endo since I was 13yrs old and I too was told all along that it was 'normal' that some women experience pain and heavy periods It wasn't until I came to live in New Zealand and I was ttc at 30yrs old that a doctor did more tests and (and although the scan and bloods came out normal) referred me to have a laparoscopy and they found stage 2 endo. You really should push your doctor and if he/she is not willing to refer you go to another doctor that will. Man, they make me mad!! Experiencing pain is NOT ok or 'normal'! Rant over... sorry Socks, poor you

And don't give up just yet (you are still young), as you will see on some of the stories here with some of us even trying for quite a while... it does happen... we (ladies with endo) are just a different breed... not rock hard... but diamond hard...

 

[lemon_tree]

I agree with these ladies. I let people tell me for way too long that pain is normal. Never again. FX and baby dust to you!

 

[xx Emily xx]

Hi ladies

Can I join?

I'm 30 and hubby is 33

I've got stage IV endometriosis
Diagnosed eventually in March '11 after 15 months of TTC
Surgery in March 11 then told to ttc for 6 months then get referred to fertility specialist...
5 months later was scanned by fert. Consultant and found endo cysts were back and too big for IVF...
Back on the theatre waiting list, went on decapeptyl to control the pain in the meantime
Surgery Dec'12
IVF April '13... BFP DD born Jan '14
Mirena coil in Jul'14

Now ready to TTC #2 but not worth risking trying naturally. So we went for IVF consultation. Ended up having an ultrasound which was inconclusive so had a CT scan... Found endometriosis again... Fertility consultant wanted to operate but had to be very careful because AMH is only 6.3
I only found this out on Monday night... And I had surgery yesterday!
So I am currently at home in agony post op!

I haven't seen my consultant since my op, but have to phone the fertility clinic on Tuesday.
I do know that he took my coil out in theatre though. And he said before my op that I would only need to have 1 period after coil came out before we could start IVF! So got everything crossed for AF in few weeks!

Sorry that was a long story!!

 

[Socks]

Thank you all so much for your lovely supportive comments! yeah I think another trip to the doctors are in order, my periods are getting worse as I get older, I have a regular 28 day cycle but lately I've gone from a 5 day to 7-8 day period, and it really does drain me!

It was over 3 years ago I had a scan and the doctors have told me I wouldn't need another one as apparently nothing will have changed in 3 years?! I'm going to push for a laparoscopy and hopefully get some answers your replies really have made me feel so much better so thank you! Xx

 

[mama.mouse]

Welcome newbies!

Socks definitely get a second opinion! I had endo from when I was 16 and 4 gyns missed it! When it was eventually discovered I had 3 very large cysts that had been causing all kinds of havoc! Don't wait! Sort it out now!

Emily I'm sorry you had to go the surgery route I had a lap in 2014 also. I found drinking lots of mint water helped with the bloating and I took my pain meds every 6 hours and just slept a lot! You will start to feel much better off with out the bother of your pesky endo.

So ladies I am 1 week into the PCOS diet and I am already 1kg down! I am feeling so much better. I have not had any bloating or acne or anything else my disgusting hormones usually put me through. I have had a little bit of mild cramping since my last AF which is a bit unusual but I did suspect that I did not O last month I do think that I have had a little bit of a flare up of endo but I'm hoping the change in diet helps curb the growth a bit. Don't want to go to the doc just yet otherwise he is going to harp on about how I should be at the IVF clinic already but hubby and I are at peace with the NTNP route until next year.

 

[lemon_tree]

Yes, welcome, newbies!

Emily, hope you get those results soon!!

AFM, doing well. Still sticking to the anti inflammation diet, but I do miss cheese.

We signed our IVF authorization papers with the clinic yesterday and now are waiting for insurance approvals. After that comes in, I order meds, stop BCP, wait for AF and then begin estrogen priming on CD21. I'm getting nervous and excited.

How are you all doing?

 

[xx Emily xx]

Thanks ladies!

Mama.m - it's lovely that you can have such a relaxed attitude and not be in a rush to do anything. Hopefully your attitude has a positive impact on your success

Lemon - so exiting signing the papers! How long is the insurance likely to take?

AFM - feeling better today. Still sore but coping much better. I weaned myself off the codeine and now weaning myself off the paracetamol. I've only taken 2 tablets today... Go me!

I phoned the clinic and now waiting to hear back from my consultant who is apparently going to phone. I'm not holding my breath, it was at 9pm last time he phoned me!

 

[jules87]

Welcome to the group Emily! Did you ever hear back from the consultant?

Lemon- That is exciting that you have signed papers! Has insurance gone over it yet?

Mama- that's good that the PCOS diet seems to be helping. Did you just look it up online?

I hope everyone else is doing well!

Sorry I've been MIA. I get on here during my breaks at work and haven't really had any breaks lately. I love being busy at work, but then I don't get to keep up with you all.

DH and I were feeling spontaneous and we decided to actively ttc this cycle. It's been a little over 2 months since my last set of botox injections for the migraines so the medicine should be out of my system or pretty close to it. I'm not getting my hopes up, its too early in the tww for me to be obsessing quite yet. Haha. I've always waited until my period was due or late to test, but this time around I think I'm going to test a little earlier. Do any of you know how soon I could start testing? Is it a specific number of days after ovulation?

 

[still hopping]

I have been MIA for a while from this post!

Emily - welcome to the group! So exciting you can get onto the next stage so soon... fingers x'ed for you that you see positive results and your dream come true soon

Mama.mouse - great results from the diet already! It does make such a difference eh? I do hope it helps your endo symptoms from coming back or a least be a lot less painful (it really did help me)

Lemon_tree - I laughed about the cheese comment... it really is not fair having to sacrifice one of the most delicious foods ever... I am such a cheese addict it is difficult to control myself around it All the best on the new IVF journey. It really won't be easy, but take one day at a time and keep in mind why you are doing this and what you want out of it... it really helps

Jules - So happy that you are off the bottox injections and are on the ttc wagon now!! Baby dust

Hang in there endo warriors!!

 

[mama.mouse]

Hi ladies
!

I've also been MIA hope everyone is well!

Jules, I saw a nutritionist who specialises in infertility and the diet has actually made quite a difference to the usual symptoms of bloating etc. I have been in a bit of pain the last couple of weeks and I am not sure if there is maybe still just a flare up of the dreaded disease or if its because I am back at it with exercising etc. Would rather have a little pain and be fit I was becoming so happy just sitting on the side lines gaining weight!

I've been taking my metformin again and also some flaxseed oil because I heard it is good for internal pain and inflammation.

WHERE ARE OUR PICS OF THE BEANS???

 

[lucy_smith]

hey ladies not popped in for a while, how are you all ?

af just turned up for me in pain and so bloated... look about 7 months preg!

going to phone the drs for an appointment about me struggling to get pregnant. what did the drs say when you went for your first appointment about ttc?

 

[still hopping]

Hi ladies!
Been a while since I last logged into this page!
Mama.mouse - sounds like you are onto a good thing with the diet and exercise... Hopefully you start feeling a bit better and that pain goes away though! Sometimes the body just needs sometime to adjust and you feel a bit worse before feeling better. I have heard about the flaxseed oil for inflammation before. I used to put flaxseeds in my smoothies but never tried it on oil form

That really sucks Lucy... Take it easy and hold tight onto one of those awesome inventions... The hot water bottle

I am well... Now 15 weeks along... It definitely is starting to feel more real and getting more excited now that it is starting to show.

My phone is not letting me upload the 12week scan pick but hopefully I will sort it out soon (I promise mama.mouse... Lol)

Big hugs to all of you ladies!!

 

[still hopping]

Hopefully it works... Here is my little bean...

 

[jules87]

still.hopping I am so excited for you! That scan is almost crystal clear. I usually can't make out the image well, but I can definitely see your little babe.

Lucy- did you get an appointment set up? If you haven't gone in already, the following are some items you will probably discuss.
They'll want to know how long you two have been actively trying to conceive.
They might ask if you have done anything to track ovulation.
I can't remember if you have been diagnosed with endo, but they will probably ask a slew of questions regarding those symptoms.
After the questions they'll probably determine any tests needed and go from there.
Good luck to you hun!

AFM- I haven't really looked into diet yet but will work on that next if current plans don't work out. I started taking a product called Soul by the company Rain. A friend of mine suggested it because I have chronic migraines and fatigue. It's supposed to help out a lot with inflammation. So I figured it would be worth a try.

DH and I talked about ttc this past week (thanks to my Neuro doctor). He was the one that brought it up. No definite plans at the moment but we have discussed what we'd like to do. Just knowing he's still thinking about it was a mood boost for me.

Hope everyone is doing well! I look forward to hearing from you all, even if it's not specifically endo/baby related.

 

[lucy_smith]

love the scan picture still hoping !!!

jules, yes i have an appointment end of next week!!!

kind of worried about it though.... think im scared they are going to say im ok, send me on my way and fob me off with some excuse and ttc for a bit longer
but all i want is answers! when are you planning on ttc?

currently waiting for my cbfm to give me a peak which should be in a couple of days ... and then another tww is ahead of me!

 

[still hopping]

Lucy... I am not sure how funding works where you live, whether you can get public funded treatment and the criteria, etc... Here in NZ, if infertility is 'unexplained', you have yo have been ttc for five years before you qualify for public funded treatment... So if there is such criteria over there, I would say for you to say to your doctor that you have been trying for longer than you have... I don't like the idea of lying but the ridiculous long wait to get some help because they can't find out what is wrong with you is the cruelest thing ever and don't wish for anyone to have to go through it
I hope your appointment goes go great and you get some answers

 

[jules87]

Todays a bad day. Pain is a 10 on the scale and I can't concentrate on anything. I'm not getting anything done at work. All I want to do is curl up and cry. But, I don't feel comfortable telling my boss that my period is causing tons of pain (not to mention it's really, really heavy; and asking him if I can go home.

I'm going to need a miracle to make it through today.

 

[lemon_tree]

Huge hugs, Jules. You could just say your stomach is upset and that you need to go lay down. Either way, I hope the day flies by and that you feel better soon.

 

[lucy_smith]

oh jules!! ihope your feeling better today!

i had my drs appointment, i have my 21 day bloods being taken on monday!!
also got bf booked in so waiting on a date for his sperm analysis.... hes not too impressed with that! :/

but i guess that is progress!
dr told me that i need to get bf to stop smoking.... she said that we wouldnt be allowed to get ivf or certain help concieving if he was still smoking...must be some sort of nhs rules so hoping that this will maybe give him a gentle kick up the bum he needs to quit