Hello.

Hello,

I’m struggling. I’ve recently been told by a consultant that there are no resources to support my recent diagnosis. I’ve come here for any support you can give, any advice, hopeful stories and for somewhere I can say exactly what I’m going through and how I’m feeling without worrying other people around me and to connect with others who are or have been in a similar situation for comfort and clarity.

A little bit about me in a nutshell…

I’m in my early 30’s, have always wanted children. I don’t currently have children.

I had a diagnostic laparoscopy a couple of years ago and was found with endometriosis patches and a hydrosalpinx. I’ve always suffered with my periods and have had many trips to A&E for pain management.

I have always had an irregular cycle, however since just before my laparoscopy, my periods have become less and less, which I suppose is a blessing in disguise, however, every 3 months I’ve been having to induce a bleed and prescribed with 10 days of Norethisterone. This hasn’t always worked, but has had an effect on my mental well-being.

I’m still under medical professionals, investigating and have very recently ( last couple of months) been told I have Premature Ovarian Insufficiency.

I’m angry, upset, frustrated & feeling very let down at the moment. I’ve asked to speak with a counsellor, but there are no resources.

I’ve been told I’m due to start HRT imminently. ( patches ) I’m told this will help replace the oestrogen my body doesn’t currently have, I will be taking it without a break and my next review is just before Christmas.

I’m so overwhelmed by everything and the thought of never being able to have children is devastating.

The thought of having HRT is troubling, unsure of any side effects I may experience but also, unsure whether this will flare my endometriosis up, as I understand oestrogen is what fuels it.

Is there anyone out there, who could possibly understand what I’m going through at the moment ?

[London_panda123]

Hey hun, I’m so sorry it just all sucks right now. I’m going through unexplained infertility at the moment so haven’t been told like you it may never happen, but it’s all such a joke. They should have more answers by now. All I can say is I know of so many people who’ve been told they can’t have kids and then go on to do so. So just because they might say it’s over, it’s not necessarily, but I understand if you’re anything like me and just want to know where you’re life’s Heading. Sending you love, be brave. Ring the Samaritans now if you’re feeling super low. They’ve helped me in the past, and then once you’re in a better head s peace, then have a look at other more specific helplines. There are many out there. I’m sure your nhs GP can refer you for counselling. Look after yourself. Be kind to yourself. Xx

[Hidden in reply to London_panda123]

Thank you for replying. I think that Women's Health care is extremely poor ( in my experience), I have CONSTANTLY had to chase and fight for tests, for medical professionals to listen, to advise, to care about my care. It gets no easier having to explain my circumstances time over to individual consultants and doctors. Have you experienced this?

I realise, there is always a slim chance of natural conception, I'm led to believe it is a SLIM chance. I've now been told my only option is to go down the IVF route with donor eggs though. I'm not a fan of this idea at all.

Yes, like you , I just want to know what my near future holds. I think coming on here to read other women's stories will be a comfort to me and people reaching out to offer any advice is always helpful!

Have you had any tests done following your diagnosis to find out why? and have you got any further forward? x

[London_panda123 in reply to Hidden]

Hey so I’ve really had to push on further testing I wanted a hycosy as suspected tubes were blocked following poss scarring from D&C - they said on the pvt clinic that essentially is be waiting the same as an nhs patient as they have to use the same equipment or whatever - so that never happened

I asked for an ERA test - they resisted and said the evidence for this was weak (this is to see if there’s a problem with structure of uterus to prevent implantation)

I asked for thyroid tests, and phospholipid tests to be done - they did this at a push these came back negative

But I’ve had to be the one driving this thing always. And they make me feel like a silly worry wort for asking these questions, to an extent patronising - but all the while not seeming to understand the emotional turmoil each failed cycle takes and the toll it has on someone

I just resigned to it and am now trying to trust them. It appears to be a ‘numbers game’ as if my uterus is a pin ball machine and if I have enough goes eventually one will stick. I hope they’re right.

No ones once counselled me ok diet / exercise / stress and the role it plays

So to answer your qn - no not that many tests I’m just trying to go with the flow for now, but I understand your frustrations entirely

[London_panda123 in reply to London_panda123]

I forgot to add my friend when to a clinic where they seemed to cover all basis so they gave her oestrogen and progesterone before transfer and then she had heparin after transfer to basically cover a lot of the weird and wonderful issues which stop women conceiving . They seems to have a ‘throw the kitchen sink’ at it approach. So maybe find a clinic if you’re considering private that will do that.

[MrsOrangejuice]

I'm sorry about your diagnosis and what you've been through. I had various gynae and related hormonal problems from basically my first period. The doctors dismissed it, then decided I must have caught an STD... Eventually diagnosed with endometriosis and I was told to just stay on the pill but by the way if I wanted kids it would be very unlikely I could have them and my only chance was if I did it by 21, 25 at the latest. Also, as soon as I came off the pill it would come back.

So I basically told myself I was not going to have kids. Then I hit 30 and I guess my genes had other ideas. Came off the pill but my periods took forever to return and when they did the symptoms were pretty horrible. I went to loads of different doctors who all said nothing was wrong based on scans and tests. I had another laparoscopy around 5 years ago and they found nothing. All the while TTC and also nothing. So IVF, unexplained infertility.

My doctors think I may still have a particular presentation of endometriosis, PCOS and/or hormone issue, as when I started IVF my responses were all over the show. I react horribly to Buserelin and Progynova (unless progesterone is added, then i'm fine), I over respond to oestrogen. My clinics have cancelled one cycle and suggested to cancel the others because each time it looked like something was not working. However... even though it's taken a lot of tweaking and false starts, I think I now have a medical regime that works ok for me. That's with the advice of the ladies on here so I really hope they can give you some useful information too, and also support.

You're young and hopefully if you get the right treatment you have a good chance. There are some good private CBT therapists - it can be a bit pricey but if they're good you may only need a few sessions and then top ups x

[Hidden in reply to MrsOrangejuice]

Thank you for sharing your story with me. It's good to hear that you have a medical regime that seems to be working for you at the moment. That's half the battle isn't it?

I must admit, I really don't want to start ANY HRT for fear of the side effects and it not doing me any good! but I do realise that unless I try the patches, I wont know. I have previously been on the mini pill and on the combined pill, both of which I hated. I was put on the mini pill to alleviate my pain, which was a constant dull period ache, it made me restless, uncomfortable and tired and really down in the dumps, no motivation. This pain used to gradually get worse and eventually ended up calling ambulances to assist with gas and air and morphine! In the end, I figured with this happening even when I WAS on the pill, that it was making no difference to my pain management. I came off it and then still having irregular periods again, to the point where I would go 6/7/8 months at a time without any bleeds. So, this is me now, having next to no periods unless I induce a bleed with Norethisterone, or unpredictably end up in severe pain with no symptoms or warning.

My recent diagnosis, means I have been advised my only way of having children would be to go down the route of donor eggs, as they already know I have a severely diminished ovarian reserve.

I think, the women on here are amazing for sharing their experiences, including yourself and it does help to be in touch with people that actually understand. xx

[DianeArnold Partner Nurse Fertility Network UK]

Hi J-T-x. S sorry to hear all this. I would check with your CCG (Clinical Commissioning Group) attached to your surgery's postcode and see what their criteria is fo fertility treatment, as to how low your hormones need to be to refuse treatment on the NHS. If you are not acceptibloe, you still might be able to be teated with IVF privately. The hydrosalpinx may need to be removed or clipped though, as any lubrication that can't escape, might prevent a developing embryo from IVF from developing, should any excess lubrication leak into your womb. What th NHS won't treat, often a private clinic will, and often with success. Thinking of you. Diane

[Hidden in reply to DianeArnold]

Hi Diane, Thank you for replying. It seems with my recent diagnosis and AMH results, that my route for children would be donor eggs, however, I really don't want to go down that route. It is a very painful diagnosis, one that is very hard to voice my thoughts and feelings on at the moment. My laparoscopy was back in 2018, and every medical professional I have seen and spoken to since then, haven't even mentioned the hydrosalpinx since to me. It almost seems like it's unimportant? I did my research back then as to what it meant to have a hydrosalpinx and how it is dealt with, but every time I ask about it, it gets thrown out. I understand the complications that can come of it, which is why I have asked about it.. but i get nowhere, it's frustrating. I don't know at this point, if it's even worth pursuing. My endometriosis concerns that I've voiced having been told I need HRT going forward haven't been answered either. I'm in a position where I feel I'm backed into a corner I don't want to be in.x