Trying to get pregnant and managing pain

[87Ballerina]

Hi all,

Feeling rather down and frustrated at the moment. Me and my husband have been trying for a baby for over 2 years now, have been transferred between 3 hospitals which you can imagine just adds to the stressful situation. I have had a laparoscopy and found fibroids and chocolate cyst but tests have show my tube clear. Through this time I have also had blood tests for my levels, ultrasound scans a laprocosopy. I was given clomid due to low progesterone level but bad side effects with servers migraine, sickness and awful mood swings. I was then transferred for IVF or so I thought.

At another hospital I have had further test but have now said I can't be treated with them for IVF but in the meantime said my recent scan Shows my chocolate cysts will need surgery before any IVF. They have booked me in for anothe lap but with so many different docs I don't feel trusting to them.

I have an appointment at another hospital for IVF late December but waiting to see if I can be seen for Gynaecology and operation there as well as IVF.

In the meantime I am in pain every month (been given no pain medication) and feel down about the whole process.

Anyone else having be same problems with NHS??

[Endoisevil]

Sorry to hear about the tough time you're having. I've had problems with the NHS too and am really don't have much faith in them anymore. We have been trying for a baby for 2 years also and that in itself is stressful! Had my first lap in 2010 after much pain and was told there was no endo found and went on to have countless bowel tests which were all clear- cue lots of pain, stress and thinking I was crazy for years. Lost confidence and friends due to never going out etc. Basically lost most of my 20s. Anyway, after years of fighting NHS and finally being referred back to gynae, had another lap where endo was removed, then another 2 years later with original gynae who casually said endo had progressed a lot since 1st lap she did- so she had found some on that first one and all the bowel tests had been pointless. Apparently it was just a tiny patch but all the reading I've done says the amount does not correspond to the pain felt. Anyway, had my last lap in October '15 and had the dye test at the same time. Same woman told me my tubes were tiny and couldn't get any dye through but they looked normal and told me just to keep trying. In June last year I ended up in A and E and and the gynae I saw then said nonchalantly that I couldn't conceive when I said we were trying. Was told I would be referred to fertility clinic then (June) but when I hadn't heard a thing by October I asked my to check and no referral had been made! I'm just upset about it all, don't have the energy to be angry. I wish I had stood up for myself more but you feel a bit beaten down with this disease and you want to trust the people who are supposedly caring for you. Sorry, this has been a long post! I think the only advice I can give you is to try to stay strong and question everything! It's not right to be lied to about your own body. Wishing you luck with everything, especially with having a baby- I know how important that is x

[87Ballerina in reply to Endoisevil]

Bless you, sounds like your going through a rough time too. Hope things start sorting out for you too. Don't know why we are both getting messed around so much. I always have the prob of seeing different docs too, does this happen to you too? X

[Endoisevil in reply to 87Ballerina]

Yes, I've seen lots of different ones and hate having to go over everything again! It's really difficult to get gp appointments too and then I've had a few who've said you should see your own gp- I tried to but can't get an appointment and booking one 6weeks in advance is no use. I understand they're totally pushed to capacity but it's very frustrating x

[Abi831]

Hi there, bit late with this post, and it's a long story sorry!

I've been trying for over two years now too, I came off the pill just after my wedding day and have been ill ever since. The pill defs masked my endo, as had horredous periods when I was young, hence the pill for ten years!

I went to my doc who told me to try other pain killers, then they thought it was ibs, then just said its period pains thats life and when I asked about TTC they said its a postcode lottery in the UK and where I live, you had to be TTC for 2 years! But i was so ill, they just didnt give a shit. I had to demand appointments, demand something been done. In the end I demanded a gyno referral, and my doc accused me of trying to manipulate the system and get in to a fertility clinic another way. At this particular appointment I argued with her for well over the 20min slot, I thought I was going to kill her. How can someone go through years of training to be a DR, and then totally use that power to make people feel so small. She finally made that referral but I left the DR's in tears.

At this point I went private, which was amazing, obvs for a hefty price! I was straight away diagnosed with PCOS, oh and I forgot to mention the NHS did send me for a scan for this as I had all the symptoms but as my private DR stated that they actually didnt scan me properly so it came back 'it was all in my head'; like why spend NHS money on scanning me and then don't do it properly! Anyway yes I had PCOS, I started metformin and went through 4 rounds of heartbreaking clomid 100 with bloody horrendous side effects! We had to stop in the end because I grew a rather large cyst. She said she suspected I had endo, which I suspected for well over a year after reading up on it. She said I needed a lap but it would cost over £3000, and she said we would be entilited for it on the NHS.

Two months later, I phoned the hospital. No referral had even been made the NHS route! And by then I asked my other NHS DR to make a fertility referral. I just gave up and waited, suffering in pain for another 4 months until that came through.

Now im with my fertility doctor, and so far he's been amazing. He recommened a drug which...

[Abi831]

....im yet to buy with my next pay packet called inofolic, which is supposed to help with TTC and also will help my hair grow back, as it's been falling out! You can only buy it online in either one month, two or three month packages.

He referred me for a lap for 4 months time from OCT this year and i've just had that op 6 days ago which had complications and left me hallucinating, horrendous pain and exhaustion ever since....and they found endo!!!!

So finally diagnoses, but I don't know what the next steps are, he did say if it was bad I would need IVF. But I haven't really been told, so need to book a follow up app in the NY.

I just think endo really needs recognition. No ones heard of it i've told, or if they have they think its like a needle in a haystack! Their just needs to be more awareness, maybe a celeb campaign, or something! And the DRs need more training! I have heard it cost the NHS system millions every year, so that's why they don't like making referrals.

I've just found out my auntie has endo, and TTC for 5 years with both her children and it's only just been talked about so my family never really knew.

How did women go through this for years?

I think i'm going to start my blog up again, hide my TTC quite brutal posts and just share a big endo one on my facebook etc.

Sorry for the long one, it feels good to share!

Much endo love xxx

[87Ballerina in reply to Abi831]

Thank you Abi for sharing. Sorry to hear that you've really been through it. Sounds like you've been passed from pillar to post a lot but at least got your diagnosis. Really hope things get better for you now.

Since my message I have nice been referred for IVF but now have to have another laprooscopy to drain cyst as if not the treatment may not be as effective. So have the joys of that again!! Just been reading thought IVF info and that is also a long process.

Wish some good luck for us both.

Xx