So Frustrated!

[lottdott]

Hello All,

I am new here as the past week has been hell for me, and I feel like I need to speak to women going through the same process as me to get some clarity. So going back to the beginning, me and my husband have been trying for a baby for a year and a half now, but I have PCOS, and endometriosis, so I wasn't ovulating at all on my own and with this I have been sort of fast tracked to IVF. We dont have any previous children so this has been a big learning curve for us both. I have been put on a course of Letrozole and Metformin and have been taking this for three months now whilst waiting for our IVF appointments to come through. I only ovulated last month for the first time ever, which was emotional for me as I finally felt like something was working. But I got my period this month so I am continuing to take the medication this cycle. We had our IVF counselling appointment and signed all the papers, but feel frustrated as we are finding out as we go through this process that we arent properly informed of all information at the points we think we should be. I have only just been told today that I need a month off Letrozole for IVF to be a success, from our counselling appointment last week they also led us to believe we could start straight away, and to my delight I got my period the next day. I finally felt like we were going to get at least close to falling pregnant, and as I am on holiday in June, I thought brilliant I could find out before I go if I am pregnant or not - we discussed this with the person giving our counselling chat and she went out asked the nurses and came back and said if I came on within the next 15 days this is all okay to proceed. Then only to be told they then couldn't fit me in the very next day.

Do any of you ladies have any tips on how I can manage my expectations and give any tips on what I can do to relax? I am on such an emotional roller coaster and feel so alone in this process, but I know there are so many women going through the same heartache. I feel like I cant trust what my consultants are telling me - as in the first instance I was only prescribed letrozole - I had to request the metformin myself after my own research. I just feel like I am constantly fighting for information that should just be given to me as these consultants are doing this day in day out. Has anyone else experienced this?

If anyone has any tips on what I can do to relax as I know the IVF process is going to get worse. I feel like I need to go to my GP so I can find out as much as I can before going into the process I want to make it as successful as I can.

Thanks ladies, and in turn on all of your journeys I wish you the best of luck and love.

[MrsEE81]

Hello lottdott

Lots of love to you! 😚

Have you tried meditation or yoga I use both of these to switch off my mind.

Xxxxxxxxxxxxxxxxxxx

[MrsEE81]

I couldn't agree more with the lack of information either. My and my partner also have no children and everything is new I wish people would explain properly and in full. Xx

[lottdott in reply to MrsEE81]

It's so frustrating and disappointing isn't it! It makes the process all that more stressful which is the opposite of what you want your body to feel. I have downloaded affirmations to listen to everyday which helped initially but the affect wore off so I think I need to look into other ways where I can switch my mind off as I think of it everyday and I drive myself insane! Thank you for your message and I wish you all the best on your journey with your partner. Xxxxx

[Hollibob]

Sadly it seems to be the way of the medical world...we have to constantly fight and do our own research.

What I would say to you is even if you are NHS funded, don't be scared to speak up.

When we attended for our first consultation after the pre tests, everything was said to us in a matter of fact way...we learnt new things that day from our tests which we didn't know about and their handling really let them down. We constructed an email and found out who dealt with their feedback and sent it to them. We were just disappointed as we knew other people that had been there and they were all nice people.

They apologised and we were invited back in to discuss things with them.

It was more about them realising that we are human and this is a big thing for individuals.

My consultant was never bothered about endo and IVF/miscarriages, he just said that IVF bypassed the endo. In my heart, do I totally agree, not really, but they are meant to be the experts!

I would ask to speak with one of the nurses to discuss the conflicting things you are being told, just so that you know your mind is happy...

[lottdott in reply to Hollibob]

It's a shame as I just spoke to a lady that scans me due to having PCOS and taking letrozole as I ovulated last month she said it was infact a cyst and I only just found that out with her today. I will make a list I think and write down all the things so far that have been conflicting and try to place it into the hands of someone who will read it. The lady I just spoke to said I will have to manage my expectations of service and expect things to be poor which is sad. This is such a huge emotional process to go through it's sad that without online services like this how alone people feel. Thank you for your tips and helpful ways to try to relax i really appreciate it! I will look up the cd you have mentioned anything to help! Best wishes to you and your journey xxxxxxx

[Hollibob in reply to lottdott]

It shouldn't be that way though which is the said thing.

Have you had an amh test done?

[lottdott in reply to Hollibob]

Yes I had my amh and I have like 130 eggs because I have PCOS also my ovaries are over stimulated which is why the metformin was so important to have! Xx

[Hollibob in reply to lottdott]

They will have to keep an eye on you then with pcos as you don't want to end up being poorly with OHSS!

I wish I'd had amh before my laparoscopies to see how it changed things.

[lottdott in reply to Hollibob]

Me to all they did to me when doing my laps was check my tubes he never mentioned PCOS which apparently you have from birth, so all the ops and scans etc for my endometriosis it was never picked up! When were you diagnosed with your endometriosis? I was 18 and they wanted to put me through menopause! Xx

[Hollibob in reply to lottdott]

Have you not had any removal of the endo then?

[lottdott in reply to Hollibob]

Yes twice, first time I was 18 years old and was private and then I had the coil which was horrible bled for 6 months with that then went back to NHS and he removed a lot of scar tissue which I was lucky with, but it's still on my bowel and kidneys how about you? X

[Hollibob in reply to lottdott]

It's ridiculous!

I went to the gp's for years with various complaints and kept getting fobbed off..looking back, I think I had it for years and years!

I've had two laparoscopies in the past, but didn't know about BSGE centres until after they had taken place.

My first laparoscopy was in 2010 when it was diagnosed. I was advised it was stage 3 and it was lasered from;

Utero vesical pouch, left pelvic side wall, left uterosacral ligament, right ovary.

My second laparoscopy was in 2013 after we'd been TTC for 8 months. The same general gyne did it and said there was some recurrent, but not as bad as previous, due to having had a mirena coil.

It was lasered from; Utero vesical pouch, right pelvic side wall, uterosacral ligaments and left ovary.

I'm not convinced it was all removed from the first lap. My body really did not like the coil..it caused daily aches until the day it was removed. I'm surprised I kept it in for so long just to try to keep the endo regrowth slowed down. I was also advised to try zoladex when it wouldn't settle...horrendous,would never do it again!!

Now 4 years on since last lap, 3 fresh IVF cycles, 1 frozen, miscarriages and some endo related things becoming more noticeable, I'm trying to decide what to do next.

We've been indicted that donor eggs might be our best route next, which I'm relatively at ease with, but my dilemma is do I have another laparoscopy first at a BSGE centre to give us the best chance. I'm just worried about the wait and I'm 39 at the end of this year...

[lottdott in reply to Hollibob]

It is so ridiculous! And gosh yes it sounds so frustrating for you, with endometriosis you are lucky if you see a consultant who knows what they are doing, from my experience it make a huge difference. They said mine was stage 4, and I had chocolate cysts at the time on both ovaries that were drained, and from my first op I thought my life was over and I would have to go through menopause and that was it. Luckily from my next op the guy I saw that was NHS cleared all of it out then put me on microgynon repeatedly until I wanted to try for children (he literally made it sound as easy as that too). As the coil embedded itself in my womb just in those six months so I understand what you mean as it wasn't suited for me either.

With your experience it's a shame it sounds like you have had someone who hasn't done the job you would have wanted first time round. I think what you have to say to yourself is in 5-10 years can you look back and say you tired everything, and would you regret not getting your endometriosis sorted this last time, I know it's a big ask of your body and putting yourself through another operation, but if you didn't do it how would you feel later down the line?

Have you heard of DHEA tablets as well? Xxx

[Hollibob in reply to lottdott]

It's just so annoying when the months pass by and you are no further forward.

I read about dhea quite late on and like most people would try anything to get a happy ending:

First round - long protocol.

17 follicles at last scan

12 eggs collected

10 injected with icsi

4 embryos fertilised

Day 5 blastocyst transfer of 1x 5ba

1x 5ab frozen

2 progressed for another day, but didn't progress

BFP with missed miscarriage - no heartbeat at 9+5 weeks

Second round - long protocol starting on lower dosage to avoid mild OHSS like first cycle, but increased after slow progress.

10 follicles at last scan

6 eggs collected

3 injected with icsi

1 embryo fertilised

Transfer day 2

BFN

FET round

Using frozen from first round

BFP with miscarriage at just over 5 weeks

I asked my clinic about dhea at this stage and they said they used to recommend it to people and that it wouldn't hurt. Took it for about 3 months before.

Third Round (private) - short protocol to try and get better quality eggs and blood thinners and aspirin for the miscarriage side of things even though none of my miscarriage tests have indicated any issues.

11 follicles at last scan

9 eggs collected

8 injected with Icsi

1 embryo fertilised

They said there was debris in the eggs, but couldn't say why this might have happened.

Day 3 transfer

BFN - started spotting 5 days before OTD

I do now wonder if dhea helped me or made things worse. There are things online which say you should have certain hormone levels tested to ensure that they aren't too high to start with and that they should be monitored whilst you take dhea otherwise you don't know what's going on.

I also read that people with endometriosis shouldn't necessarily use it, but my clinic didn't seem bothered about this, but it'll always be a wonder in my head...

[lottdott in reply to Hollibob]

Oh gosh it's such a minefield isn't it you do everything you can for it to work and your body just has a mind of its own. I am so sorry to hear of your miscarriages. ❤

I heard of DHEA as a colleague of mine at work went through it with his wife and she was 40 having IVF and it helped with her egg quality but like you say if you aren't sure of side affects with endometriosis is it worth it. I mean if you have another clear up it might help matters but it would be good if you could speak to a professional about it that is going to say it is a good thing to do or not. During this process it's so easy to get lost in information on the internet that you don't know what to trust. Maybe see if you can speak to someone at the BSGE centre that could help make your decision? I do wish you all the best in luck and love on your onward journey! I will keep fingers and toes crossed you get the good news oh deserve xxxxx

[Hollibob in reply to lottdott]

Thanks and you too

No two consultants ever have the same opinion either!

[lottdott in reply to Hollibob]

I can imagine! Good luck you deserve it xxx

[lottdott in reply to Hollibob]

Also I have heard of an old wives tale the week before implantation to eat pineapple is good, I heard it from a friend who has been through ivf just thought I'd share that incase you wanted to try it. ❤

[MrsEE81]

Thank you.😙 All the best to you too. It's definately a battle of the mind Um going to attempt to shake it off to Flora nice and the Machine! Xxx

[Hollibob]

I have reflexology/acupuncture and got the zita west cd to listen to at bedtime...

[MrsEE81]

Reiki treatments could also help to relax. Xx

[lottdott in reply to MrsEE81]

Ah yes I had reiki back at the beginning of April and felt much better for a while so I will see if I can book in with her again, she did say to me she can see a baby in my future but going through this process you take it all with a pinch of salt and prepare yourself with that it may never happen. Xxx

[emmab178]

Gentle exercise, reflexology, massages. Whatever gets you through on the stress front.

Unfortunately you put your life on hold with this process. I guess we were lucky that our clinic didn't feed any false info the only major annoyance was the long wait to start.

My endo was also ignored throughout the ivf treatment. I don't have the greatest faith in drs. They are human and can have off days as much as anyone else. I also find they never tell you when they don't know maybe because I've had mainly male consultants! I think the endo was ignored because they just don't know and lady bits are some kind of dark art medicine!

I'm not sure the GP would be able to advise you further unless they are experts in fertility? Mine is such a generalist that even my endo took years to diagnose so I treat her as admin for real drs.

This site is very good for info so you in the right place for specific questions that you can then take to your clinic. Unfortunately it does seem that some clinics are better than others.

Definitely write down questions to ensure you cover everything.

Once we did get going, it seemed it went by quickly so hang in there x

[lottdott in reply to emmab178]

I have a female consultant for my IVF so I will let you ladies know if she is any different. I had two operations on my endometriosis and when I went for a scan for diagnosis of PCOS (which by the way my GO categorically said to me I didn't have but that's another story again) - the lady doing my scan said well I can't see any endometriosis like I had made it all up. I have been on the pill for seven years back to back so I am thinking this also could have a part to play.

The last GP I saw as I don't see the same dcr twice also had gone through ivf so we sat and spoke about things which was helpful but I agree like u say unless they are specialised they don't really want to help.

Thank you all for your wonderful advice and tips it's been so nice to finally talk to people who understand! All my friends currently have babies or are pregnant so they don't want to talk to me in fear they are going to upset me, which I understand but I don't want to become that person I am so happy for them all I just want to put myself first in this process and try to get through it as best I can.

I have currently enquired about acupuncture and downloaded zita west! As well as look at some reiki appointments.

Thanks again! Xxxx