Waiting for treatment - things to do in the meantime?

[Ltry]

Hello, I have been on the forum for a couple of months reading the really helpful posts but never posted before. Just looking for some advice about tests and trying while we wait for treatment.

We have been trying for 18 months and GP referred us to fertility clinic after 12 months and some tests. We had our initial consultation with the clinic but were told we can't access NHS funding until we have been trying for 2 years so we will have to wait and keep trying until later this year.

So far I have had blood tests (day 2 and day 21) and my husband has had 3 sperm analyses. The only thing that has come up is low morphology but the clinic says that this isn't really enough to diagnose MFI as the rest of his numbers are fine so we are being treated as unexplained infertility. I have had an ultrasound which was fine and I'm having a hycosy next week but the nurse we spoke to at the clinic says she expects that to come back clear.

Although my tests have come back ok I am fairly sure something is off with me as my periods are very light. The used to range between 27 and 32 days but since I started on proceive supplements they have been 30 days every month but still very light. I bleed for about 36 hours and not much blood. In particular I have very little red blood at the start. I used to have 2-3 day periods with normal flow but about 2 years ago they got lighter and have stayed that way. I did go to the GP back then but as I was having regular cycles she didn't refer me for any tests. Of course now I am beating myself up and thinking we should have started trying earlier.

Does anyone have any tips for any other tests I can ask for? I am thinking of asking for my thyroid function to be checked. My mum and sister both have thyroid problems. Alternatively any tips for making my periods heavier? I feel like my lining must be very thin if I am not bleeding much so even if we are managing to fertilise an egg it isn't going to implant.

What else can we do to increase our chances while we wait for treatment? We are both on proceive max.

I am also struggling to deal with the emotional side of things. It feels like I am grieving every month and go through a cycle of getting my hopes up and then inevitably it doesn't work and I am crushed. I know we will get counselling as part of treatment but wondering about finding someone now. I'm not sure if I should go with someone locally (cheaper) or go with the clinic therapist who also works privately (more expensive) so that there is continuity when we get the funded counselling. Also does anyone know if the counselling offered during treatment is individual or couple?

Sorry for the long post! Thanks for reading and grateful for any tips!

[Purpledoggy]

Grieving for something you never had is the worst! No one other than those dealing with infertility will ever understand it. Try to do lots of nice things as and when we’re able to and just relax and enjoy life because I do think that gets a little trickier once treatment starts (hopefully less so once we’re all jabbed up!). Definitely look into thyroid given your family history. Best of luck and keep us posted xx

[Ltry in reply to Purpledoggy]

Thank you! I am just starting to try to focus on other things and do things I enjoy to distract myself so will try to keep up with that.

[McQueeny]

Heya it’s a really tough journey, and I’m the same as you in feeling crushed every month. It’s so hard. I’m sorry you’re going through this. We did have success with IVF though! (Now trying for a sibling).

I don’t have much to suggest in terms of tests - we did the same basic tests you did, but once those came back clear just went straight to IVF. Other ladies will have some suggestions I’m sure.

But in terms of what you can do - I think I’d focus on getting yourself healthy and keeping feeling like you’re doing ‘something’ while you wait.

So things like supplements (coq10, zinc, etc), fertility yoga (if you look up Bettina Ray on YouTube I think she’s great), interesting and healthy diet , swimming etc. I know it doesn’t seem like a lot and you’re probably doing that already but try and think of ways for you to feel like you’re investing in your future success?

Hope that makes sense.... sorry if not helpful. It’s a crappy journey we’re all on! I definitely think counselling is a good idea too 🤞🤗 x

[Ltry in reply to McQueeny]

Thank you and congratulations on your success! I do a regular yoga class each week but will look into specific fertility yoga. I'm doing couch to 5k to try to get my fitness up but might try swimming for lower impact. I think it definitely helps to feel like I am doing something.

[Millbanks]

Hello lovely, sorry to hear you've been struggling. This is the place to be! Do you know what your AMH / AFC are? Your AMH (anti mullerian hormone) tells you what sort of egg reserve you have and your AFC (antral follicle count) tells you roughly how many follicles you have in each ovary.

My periods have changed somewhat since starting IVF - but there doesn't seem to be a link between the thickness of the lining and having a light bleed. I still manage to have a thick lining (thick enough for transfer - 8mm) and still have really light periods. I read the other day that anemia can cause lighter periods - and an iron supplement can help that.

I would definitely get your thyroid checked - I don't have any family history of thyroid issues but mine was a bit higher than they would like for pregnancy - so I'm on 50mcg a day of levothyroxine until we're done with all this!

There are lots of supplements you can take to help get yourselves ready for the next step. There is a book called "It Starts With The Egg" which is full of info and I found really useful. Both for myself and my husband.

Its a difficult time emotionally for sure - there are so many variables and so much waiting that it is hard. I find I'm at my best when I have a plan in place - even if it's not happening for a while - just knowing what is in the pipeline helps.

Counselling is a good idea - I would find someone specifically who deals with fertility and possibly has some experience themselves. There are lots of Instagram accounts too that are really supportive and can make you feel less alone. Our clinic offers couselling for both of us but I've never taken them up on it and found a separate counsellor / nurse who was amazing and full of helpful tips too. Happy to share her details if you like.

xx

[Ltry in reply to Millbanks]

Thank you for the derailed reply. I don't know what my AMH or AMC are. Would these have been part of the tests they did on day 2 and day 21? I was just told everything looked fine without going into details of what had been tested. I was told my prolactin was slightly raised but not high enough to be a concern. I am 31 so hoping my egg reserves are ok. Interesting that there doesn't seem to be a link between lining and light bleeds. The supplement I am on contains iron but not sure if that would be enough? I will definitely press for a thyroid check! I will look into the book too.

I agree that it helps to know what the plan is! It's frustrating that we have to wait 6 more months. I just feel like it's not going to happen so just want to get going.

I will look into local counsellors and try to find someone with fertility experience but might come back to you for the details of I can't find someone.

[Millbanks in reply to Ltry]

Yes the AMH is checked with your bloods usually and you AFC is done via an internal scan that looks at your ovaries. You don't necessarily need to know them (don't worry) but if your AMH is low then it can indicate a possible reason why you're not falling pregnant naturally. In regards to your periods do you know when you ovulate? I mean have you ever tracked your ovulation either with pee sticks or basal body temperature charting? Because that can also tell you a lot about your cycle.

x

[Ltry in reply to Millbanks]

Yes I have been using the pee sticks for about 6 or 7 months. I generally get a positive half way through my cycle so now they are 30 days I get a positive on day 15 so presumably I am ovulating day 16 or 17. The doctor said my blood test indicates I am ovulating too.

I will ask if AMH was checked and if not might push for it with the thyroid check.

[Millbanks in reply to Ltry]

That all sounds good! If you've got a 6 month wait I would highly recommend taking Ubiquinol 100mg x 4 a day - this really helps with egg quality x

[soccerkt6]

Hi lovely, first of all, well done on being proactive! We also went to our GP after 12 months of trying and then had another looong year of tests and waiting before becoming eligible for IVF. In hindsight, I feel I really frittered away that second year by just hoping that something would change and we would fall pregnant naturally. This waiting period (while admittedly very frustrating), is actually a great opportunity to do exactly what you're doing -- undergo additional investigations on your own so that you have the full picture of what's going on and can make changes if necessary, and hopefully feel fully prepared by the time IVF comes around.

Your situation sounds very similar to mine. We were also diagnosed with unexplained subfertility after doing all the standard NHS investigations. My husband had normal sperm analyses with the exception of slightly low morphology (2% instead of the recommended >4%). All of my blood tests also came back normal though I've had very light periods since having my IUD removed in 2018. I basically have one day of proper bleeding, one day of light, and then several days of spotting.

Based on my experience, here are three main things I would recommend:

1. Pay for your husband to have a sperm DNA fragmentation test. Abnormal sperm analyses (even slight ones, like your husband has) increase the chance that he has high fragmentation. After our failed IVF cycle it was recommended that my husband have further investigation done. Frustratingly, his dna fragmentation test came back with high fragmentation which solved the mystery of the "unexplained" diagnosis, but would have been very helpful to know before we went through a failed cycle! If your husband does have high fragmentation, you want to start making changes now so that it's improved by the time IVF comes around. Any changes you implement will take 3-4 months to take effect.

2. Find a private doctor/ clinic that does cycle charting and start working with them. It sounds like you have some hormonal imbalances/ infections. The hormone problems might not be acute enough to flagged by the NHS on your blood tests, but if you chart your cycle for a few months and have some well-timed tests a good doctor trained in charting should be able to identify what's going on. The short period can be indicative of low progesterone in the second half of your cycle (that was the case for me at least), and I think brown bleeding at the beginning of your cycle can sometimes indicate an infection...? I've been working with a clinic for six months now that has totally opened my eyes to what's going on with my body and we've started treating some of the issues that we've found. I highly recommend them. Message me if you'd like their info.

3. If you suspect thyroid may be an issue, I would definitely get it checked. If you decide to start working with a private clinic though, you may want to hold off for a second and see what other tests they recommend because they might want a full thyroid panel rather than just TSH.

For the emotional side - I would find someone who specialises in fertility but not necessarily go with the clinic counsellor. We only got one free counselling session with our IVF round anyways, so I wouldn't hitch yourself to a more expensive counsellor just for the one free session. It's a really horrible feeling trying every month and never getting anywhere, and it can definitely start to mess with you mind. So good for you for making sure you're prioritising your mental health.

Sending you all the best. Happy to share more details of of our experience if useful xx

[Ltry in reply to soccerkt6]

Thank you for all of this! I will ask about the DNA fragmentation when I am at the clinic next week. What are the treatments if there is fragmentation?

I didn't even know a doctor could specialise in charting. Would be interested in the details if you can PM me.

Sounds like the thyroid check is a good idea from everyone here so will definitely request that.

[soccerkt6 in reply to Ltry]

Very glad to help. I'll pm you now with the clinic info.

Our doctor recommended the following when we found out about the high fragmentation:

-take 5ml cod liver oil per day (for omega 3's)

-take a potent multivitamin like Proceive Max for 2 months and then switch to Impryl (Proceive Max has a lot of strong antioxidants so you don't want to take it long-term because it can throw your body out of balance)

-start 5/2 intermittent fasting and eat a mediterannean diet (the intermittent fasting isn't for weight loss - it's because apparently it helps prompt your body to clear out damaged cells)

-limit sugar and gluten to max 2x per week, ideally

-limit caffeine to 2 drinks per week and alcohol to 4 units per week

-have a scrotal ultrasound to check for varicocele

-check for infections with urine/ semen tests

Depending on the cause of the fragmentation, surgical sperm retrieval can also be an option. xx

[Marisa32]

Hi, I would definitely recommend the thyroid test asap, especially since you have a family history there. TSH should be below 2 closer to 1 when ttc. I too have thyroid issues and my periods were always super light and longer cycles. Not sure if that's related though. Fixing my TSH alone got me pregnant naturally before starting stims actually. Also, DNA fragmentation test for your husband. Just to make sure all is well on his end before putting yourself through IVF treatment. Regural sperm analysis wouldn't catch those issues. Good luck!

[Ltry in reply to Marisa32]

Thank you! Interesting that the TSH fix worked for you.

[Marisa32]

Yeah, who knows if that's what did the trick. But I was trying for over a year and nothing, so went to IVF clinic. They diagnosed my thyroid being over 2.5 which is not good for fertility. They got it down to 1 before putting me on stims and boom - all of a sudden I was pregnant at 38.