Feeling Deflated and Hopeless

[Puddle-Duck]

I’m trying to take things one step at a time but I am concerned things are heading in the wrong direction with the fertility clinic. I have moderate diffuse adenomyosis, I’ve lost 2 pregnancies, 1 early miscarriage and 1 suspected ectopic treated with methotrexate (conceived spontaneously). I had my first fertility clinic appointment a little while ago and although it started great it’s the same issue I had with the gynaecologists, when I ask questions about adenomyosis, they close doors on me. Basically I am left confused as they said that other than a Hycosy and clotting disorder blood tests (I am keeping my fingers crossed for a laparoscopy to look for endo) there isn’t anything they would do at this point since I’m not infertile. The Dr avoided saying whether they felt the adeno had an impact and when I directly asked if they found nothing else wrong with me and I kept having miscarriages would that be unexplained infertility then, they said yes! I am so worried and angry about this because I know in my gut and from everything I have read from every other countries, that they are wrong and even though adeno doesn’t impact everyone like this, I think it is for me. To me, it’s common sense that an issue with the organ would impact its functions. So, at the end of it all we spoke about IVF if my tubes were blocked. But then they stated this wouldn’t help me with the adeno issue….? Which I understand, putting a healthy embryo into a broken uterus is the same as what I’m doing now. But am I crazy, or did they contradict themselves? Adeno has an impact then? The bottom line for them was there was nothing they COULD do for the adeno even if it was causing my issues but really after the discussion, it was clear there is nothing they WOULD do for the adeno because of the lack of research for anything to do with it. But they will leave me to keep trying if my tubes are open. Then what, just hope one sticks. No support whatsoever not medically or psychologically for throwing me back into the fire. I suppose it is free for them to do that, no cost to them, just me. And it’s not an answer to just stop trying, not when they throw out lines like “well you are both healthy so..” do I actually have a chance at this then or is this the only option cause there is nothing you can do? I’m just left confused, upset, more suspicious of how the NHS are handling this condition and feeling alone about that. I am very keen to have down regulation if we do IVF but they have said no as they do not feel there is enough literature to say it improves the live birth rate, yet other people on the NHS have done this for adeno? I want to know about the receptivity of my womb and whether there is anything they can give me to help me stay pregnant like asprin or progesterone pessaries or hydroxychloroquine. All questions I will have to ask, because they won’t suggest anything it seems.

Also they are clearly ignoring that it took a longer time to get pregnant in the first place which I would want to blame on the adeno too but no one can really know for that. How much time can I waste trying again and failing? This is more of a rant than anything else. I can see on this platform there is a mix of opinion as well about how adeno impacts fertility. I am speaking about my type of type of adeno, it’s severity and the fact that everything else seems fine so far age, health, bloods etc. Some people have no problems with adeno, but I think it is affecting my fertility! Everyone has moles on their skin but not all moles are cancerous. Doesn’t mean we ignore moles that look like they are problematic just because other people are fine with theirs. There is no logic or meaning in saying “people still get pregnant and carry to term with adeno,” like all conditions, severity matters!

I don’t really know what I should do with all this. I see myself in 1 year/2 years time posting here again being heart broken cause nothing is working and no one will help me. The only difference will be that I’m older and getting closer to them being able to blame it on my age. I hope I will be free of all of this by some miracle as that is the only hope I have now.

[Rubylou01]

Hey puddle duck - am really sorry to read about your story. I don't have this condition so am sorry not to be able to share any experiences. I'm not trying to diss the NHS as for a lot of people this works great. But I've found their one size fits all approach distinctly unhelpful and it might be that you would be better trying to find an expert in your condition - by emailing private clinics (abroad as well as locally) and asking if they have experience in treating women with this condition and how they manage it. Even if you can relay that to your NHS clinic it might give them some food for thought or mean you consider alternative treatment elsewhere? Wishing you all the best xx

[Puddle-Duck in reply to Rubylou01]

Hi Rubylou,

Thank you for your reply. I definitely would love to find somewhere that could guide me and the NHS but I feel they would only listen to someone from the UK and I can’t seem to find a genuine medical profession who addresses the issue. They may tag adenomyosis but they either don’t relate it to fertility or when you look into them more they don’t talk about it anywhere. I really don’t know if there is an adenomyosis “expert” in the UK anywhere. I have been private already and I would do it again, despite not a good experience, but if I could find the right place. If you see anything, please let me know x

[Conceivingblee]

Hi puddle-duck.I have severe adenomyosis. This wasn't the cause of my Fertility issues that for 7 years they said we're unexplained (but werent) just a lazy UK clinic not doing what they should.

Adenomyosis unfortunately has not been studied enough bearing in mind the effect endo has on women which has only started to come to the forefront in the past 7/10 yes.

What I would say is when I move abroad my care level for this medical issue shifted. I did a 3 month down regulation before transfer both endo and adenomyosis are fed by oestrogen so thats tough when us ivfers need that.

I'm pregnant currently 22 weeks. But my fear rather than falling pregnant is spontaneous abortion or prem labour as the ability for your womb to move and stretch is impeded by adeno. Because of this I'm having extra scans to make sure the baby is growing OK.

What I would say to you. Is put you money into a hysteroscopy make sure there are no other issues I honestly don't believe infertility is ever unexplained but is often the product of lazy clinics who want easy wins . I fought long and hard with my UK clinic about and over many things till I won.

Make sure you are satisfied all the tests you and your partner need are done/ have been done upfront. I'm not sure how old you are or whether that's a factor..

This journey is awful and only you will you advocate for what's in your best interests.

Good luck . Xx

[Puddle-Duck in reply to Conceivingblee]

Congratulations and thank you for your story. I think I will probably have to end up going abroad if they just won’t listen to me. I don’t have the time for them to not care it or be willing to try anything. I’m 30 but my uterus hasn’t aged well.

I really hope everything goes well for you and I can totally understand all your fears. 💛I’m glad to hear you are getting extra scans and you are nearing a time where baby has a good chances x

Thank you for making me feel like I’m not crazy. I have posted in a a few different places and people have told me basically me stressing and fighting for myself is more harmful than adenomyosis for a pregnancy. The people saying that also tend to not have had success after many transfers and that freaks me out even more, as then just being calm clearly isn’t working! It’s not as straight forward as that ofcourse but it doesn’t fill me with hope or make me want to take their advice.

Thanks again and all the luck, I hope to see a post on your page and that you made it 💛

[WanderingWonder]

Hi Puddle-Duck

I have a mild adeno diagnosis following a hysteroscopy. My clinic does not feel it’s an issue…I know your circumstances are different however:

We had assumed I was the issue for more than two years - I endured every test you can imagine before considering it could be a male factor issue.

Has your partner had a full check? NHS sperm tests sometimes miss morphology issues.