On then off. NHS such confusing and stressful treatment

[Cuppppatea]

Approved for fertilty feb 2023 - told we would wait till march 2024

Randomly in august we were contacted to start.

Egg collection 6 Sept - 3 eggs - no blasts/ (cycle was a disatter and delayed starting till day 4 of my bleed due to them realising i needed a colposcopy result which was rushed through)

19th Sept - Call with Dr did not explain the reason why. Dr said our case would be reassesed to go back on waiting list.

22 Sept - Email from clinic saying they have booked a Nurses pre-trement appointment so that we can start a treatment cycle in October.

28 Sept - Attended clinic - did a treatment plan with Nurse - checked it with Drs. blood tests. Day 11 of cycle.

10 Oct - Attended clinic for baseline scan. Dr reported FSH 26 (not accurate as done day 11)and AMH 1.8 and 8 folicles. She ran through the minimum NHS requirements for treatment and said we did not meet. I got upset and me and my husband explained we had already been approved for a cycle???!? I was due to go in for a scan the first day of my period which would be 12 October - The nurse spoke to us and reassured us and said to email her to as we may be able to skip pretretemt and go straight into injections.She stressed how little time I had left.

11 Oct - Sent email reminding but also stupidly said that my blood tests were from day 11. That day the nurse called to say I wouldnt need to rescan but I would need to repeat bloods. I felt releaved would this help tailor my new meds better?! Would that even matter???

12 Oct - Dr calls me personally. Says I will need to meet the criteria before new cycle going ahead. What a head f-ck. !!!! Im so confused and upset. I have already been approved??!

My levels have surely gone down since my inital reading in Feb nearly a year ago.....I know I dont meet the AMH.... im wondering did they approve me because I met two before? Its so horrible feeling like this and trying to de-stress when I was already trying to psyc myself up for actually having it.....feeling stressed and upset and messed around. I dont know about my FSH reading on day 1-4.....I meet the folicle count of 6 ...mAX is 8.9 to qualify and amh is min 5.2.

I want to complain about the mess of the first cycle to be honest. Shall I push with the fact id already been approved??? One dr in particular seems intent on finding reasons to deny me treatment as there have been problems arising in my medical history I have had to absolve more than a few times.

[Tnthketnf]

I would complain for every single issue you mentioned above. But be prepared for waiting.When I was having treatment with the NHS I had several small or big issues. Every time I spoke and asked to speak with a senior nurse/Dr there was some sort of resolution, not necessarily what I thought it needed to happen but some progress. I also found that the doctors didn't know the admin side of the process very well so they often caused me unecessary stress by saying things that were wrong.

The admin/reception staff were the worst they gave wrong information and were completely inflexible.

[Cuppppatea in reply to Tnthketnf]

I’ve already been given my treatment cycle plan on paper and sat down with the nurse ?! Don’t want to retest because I’m Anxious they will find a way to kick me off. I want to start next cycle. Can I just say I’ve been approved already and say I don’t want to retest? The results they have are within 6 months so should be ok ??? I’ll ask to speak with the lead consultant. I have it in writing twice that I’m starting a cycle ? I’ve not slept a wink which isn’t going to help is it

[Cuppppatea in reply to Cuppppatea]

And I really don’t have time

To waste with my amh being so low

[Tnthketnf]

The communication part with the NHS is really poor. If you have it in writing then I would think it should be OK. I hope it's all sorted soon and you can start your cycle soon.

[Cuppppatea in reply to Tnthketnf]

would you say that is confirmation ?!

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[Tnthketnf in reply to Cuppppatea]

It looks like it yo me but I wouldn't know for sure, I am sorry. All the best!

[Sarakht]

unfortunately with the nhs this is common practice for every next appointment or consultation there’s a 3 month wait delay whatever you want to call it. Try and fight your corner, but I wouldn’t waste my precious time on the waiting list.

[Doodlebug23]

Really sorry to tear what you are going through. Unfortunately it does seem to be a fairly common story. I am now private abroad and the treatment, communication and tbh just everything is so so much better. This process is so stressful for so many reasons without that added on top. Hope you get sorted x

[Cuppppatea in reply to Doodlebug23]

Where are you having treatment abroad? I have had a blood test and now i'm waiting to see if I can go ahead with the cycle they have already planned for me?!

[Doodlebug23 in reply to Cuppppatea]

I’ll pm you x

[HCNW]

I’m really sorry to hear you have gone through all of this. I’ve had some difficulties dealings with the NHS too. Unfortunately with the NHS we are not seen as desperate women doing everything in our power to try and conceive naturally or with the help of IVF or other means. We are simply seen as a number. It’s easy for them to say keep our stress levels down but half of the time they cause us the most stress. I personally would complain but I understand that you don’t want a back lash or for them to treat you any differently.

Maybe you can have a friendly chat with a nurse and voice out your worries or concerns.

[Cuppppatea in reply to HCNW]

I have thought about complaining to be honest. Would I speak to the lead consultant? It’s so time sensitive for me now. I gather that they need test results within the past three months - which I had at the time of them Writing to me to say book a pre treatment appointment with the nurse so I can start a cycle in October. It just so happens that they wasn’t able to start asap due to my cycle and plans for downreg start in about two weeks …. So my tests become out of date ?! It’s shocking. I’m so worried my fsh is going to be over .

[Cuppppatea]

sure enough they have now tried to kick me off

NHS Eligibility Changed just before starting a Cycle. FSH, AMH

I had a round in August which was unsuccessful and a disaster. No blasts. Think the timing was all wrong.

Before that my AMH was 2.2 and FSH 7.

In my borough you need either 1) above 5.5 AMH or 2) Bellow 8.9 FSH

Mid Sept – Email confirming pre-treatment appointment.

Late Sept – We attended the clinic, confirmed our treatment plan and discussed medication with nurse. I believe she checked this with you in person while we were still there. I was told to attend a scan on 10th October and book another for the first day of my period. Due to start treatment late Oct.

Early Oct - Attended clinic for scan. Blood test from 28th Sept flagged higher FSH this was 26 -

(HIGH because It was done on day 11 during my ovulation phase??.)

Lots of confusion about next step. I was called by DR and told I had to retest day 2-3 of my period.

I decided Saturday being day 2 (Being unsure if I started my period late on Friday night or Saturday and Sunday tests being unavailable)

Feeling nervous about the process I decided to go for a private blood test Monday night. (Realistically I know now this was day 3)

Fastforward to the test results: NHS say FSH:15 AMH:1.8

Private say FSH:8.9 AMH:2.2

NHS told me over the phone that I now do not qualify for treatment.

I have contested this result and the decision, I was due to start a cycle next week - obviously won’t know. I haven’t heard anything back.

Any one else have this experience?

[Cuppppatea]

GOOD NEWS! Dr called and is happy to accept the private blood tests. I was supposed to start Norethisterone Tuesday but we have tried to conceive naturally this month so will go next month.

Incase anyone is interested: DHEA arrives next week and I thinking to do 25g a day until I start. (Testosterone is 0.7)

Dr has called today and talked through the plan:

Last AMH: 2.2 and FSH: 8.9

He has added suprecur trigger 2ml with the Gonsai and given me the option of adding clomid into the mix - he said I should research and let him know - he said the downside can be thinning uterus lining for fresh transfer. (Last time I was told on egg collection that progesterone was too high for fresh transfer)

Nothisterone 5g twice daily on day 18

Meriofert 75 +Fostimon 225

Fymadel 0.25

Gonasi 10,000 + Suprecure

orrrrrr

same protocol with 150 clomid +Meriofert 75 +Fostimon 225

I would appreciate any thoughts.

xx