Looking for support

[Luce24]

Hi everyone, I'm new to this site & desperately hoping to find others who  are or have been in a similar position to myself. 

I was diagnosed in Jan 2015 via laparoscopy surgery. This was following the discovery of a cyst on one of my ovaries during some fertility tests. I was worried about my fertility as a single women of 39 and went through some standard fertility tests, only to be diagnosed with endo at the end of those tests; something I really wasn't expecting. 

On reflection I can see that many of the health issues I have experienced over the last 15 years can be linked to endo and I probably could have been diagnosed a lot sooner. I took the contraceptive pill for many years so this obviously masked some of the more obvious symptoms but still there were others that I feel could have been linked together much much sooner than they were. 

Following my surgery I received no after care from the NHS. I have gone backwards and forwards to the GP with various symptoms since my surgery but no one has really known how to help me. I requested to start Amitriptyline and have been taking 20mg a day for the last 7 months; partly to hopefully help with period pain relief and partly for feelings of depression. 

Due to the risks to my fertility - I have endo in my womb - I was offered IVF but his had to be done almost immediately due to my age and funding criteria so I embarked on my first cycle in August 2015 with a donor. The biggest and hardest decision I have ever made in my life. Sadly this cycle failed. 

8 months on & I find myself in a new relationship - something that arrived in my life very unexpectedly but something that has been good for me. My new partner has been supportive in terms of my fertility issues and he would like children so we will be considering IVF again in the not too distant future if things work out for us. 

Since the relationship started I have struggled massively with bladder issues that appear to be triggered by sex. Symptoms of bladder irritation, soreness, itchiness, burning, urgency, a lot like cystitis, rarely do water samples throw up any sign of infection so I have started to consider the likelihood that I am suffering with intersistinal cystitus. I have been self managing the symptoms week after week through a combination of cystitus sachets, probiotics, pain relief, even thrush medications (as seem to be quite prone to this also). For the last month I have been suffering with persistent symptoms but have also generally felt under the weather, chronically tired, a really unwell looking complexion & decided I should speak to GP, having done this  today I have been diagnosed with a UTI and quite severe dehydration. I thought I was just experiencing my usual symptoms but clearly not. 

The after care that hasn't existed may be about to emerge, after I found an article in the newspaper about our local hospital having a specialist endo team with access to consultants, a specialist nurse & physio. I had no idea this service existed and it would appear that neither did my GP Practice - so after self-referring I am finally seeing the team on the 11th May. I feel very disappointed that it has taken 16 months to finally be referred to a service with specialist knowledge of this debilitating condition; because debilitating is exactly what it is; it has left me feeling as if I'm stumbling around in the dark trying to be my own consultant and advocate my own treatment plan when actually this is all completely new to me. I have been left only understanding from my own research what this condition may be doing to my body on the inside. On the outside I see the effects; I see the extreme levels of tiredness which make me feel like I'm aging by the day and I feel the terrible hormonal lows that no one seems to be able to help me with at all; my hormone issues and mood swings seem to be a total mystery to medics but I know others must suffer. I manage this condition as best I can, reading about it everyday alongside all the literature on fertility; some days like today I feel totally overwhelmed and have to stop. I try and share with my friends, family and partner but I truly feel as if no one really gets it or me anymore. I hold down a demanding career and try to keep up socially as expected but every two/three months I hit a complete wall of burn out. I feel this coming between my partner and I already. I feel very frustrated with his level of disconcern; sometimes I think that he thinks I'm making it all up and just being melodramatic and moany & that I should shake it off. He doesn't say it but this is how I feel. It leaves me feeling very isolated and I am at the point where I am considering ending the relationship as I just don't feel that chronic conditions and relationships go well together. I end up pushing myself to please those around me and to lessen my feelings of guilt but then only I lose out - just as I am today, having to be off sick tomorrow and stay bed bound. 

My fertility mountain feels exactly like that; a mountain. All I am told by professionals is don't leave it; act quick or there will be no chance of having a baby. This is so so hard and heartbreaking as it is all I have ever wanted but feeling this fragile I just wonder would my body ever be in a position for it to happen and I always sadly think not. 

I feel angry and sad and resentful towards those that I'm trying to reach out to but they just don't understand. It's a lonely place to be and my instinct is to cut off further. 

Just hoping that there is someone out there who may be able to relate to even a small part of my story. 

Sorry to sound so negative! But I'm sure the UTI isn't helping on that score. 

Thanks for reading, to those that have - Luce x

[Naomi1002]

You almost just written my story so i can completely relate to you with the endo story. 

I am waiting for a referral too to see my gynacologist after not receiving after care, a lot of visits to lots of different gp's. This took me 1,5 years.

I was signed off from work with burn out/depression for 2 months.

 I do crash, exhaustion and tiredness, pain everyday , from numb pain, to stabbing and being uncomfortable whatever i do. 

I can completely relate about moodswings, misunderstandings, people dont want to ask anymore. The anger and sadness what i have been through and lack of motivation to do anything positive and nice. 

The feeling of being not really a women, the constant problems of pain and having difficulies with intimacy. I am 35 and not even sure if i would like kids, not really knowing, but with feeling like how i am now, i am not sure to have the enrrgy. 

I hope this hrlps you to know you are not alone. Xx

[Luce24 in reply to Naomi1002]

Thank you so much for taking the time to reply. Your feelings of frustration and hopelessness certainly mirror mine. It does help to know that others have experienced similar & that the exhaustion isn't just felt by me. It's so hard to know what's endo and what is anything else. 

I feel myself closing down all the time - as I can't seem to find anyone to understand what it's like. I think when something is as invisible as endo it makes it almost impossible for people to realise and they all seem to forget so quickly. 

Do you have a partner? 

I understand what you mean about feeling you may not have the energy to have a child but do consider it sooner rather later if you can. I would hate for anyone to leave it as long as I did and then spend so much time wishing I could turn the clock back 5 years. 

Luce x

[JeanOsborne]

Hi luc, you're not alone,Hun. Firstly I want to say that I'm glad you're finally with a specialist centre. Have you seen them yet and if so what is the treatment plan?

I, like you found my self in a very similar situation.

In October I was finally sent for an ultrasound scan due to not being able to conceive. It showed a 6 cm endometrioma. I had my diagnostic lap last July where it had grown to 11cm. Everything was completely stuck together, my surgeon couldn't even see uterus because adhesions were sore thick.

 We eventually decided a hysterectomy would be my best option(he also suspected adenomyosis) both ovaries were badly damaged. So the beginning of March I had a total abdominal hysterectomy, BSO and excision. 

I'm doing well but I know had this been diagnosed earlier I would probably been able to have children. 

I'd been having symptoms since the age of 15 I'm now 42.

Did they remove the endo when you had the lap last year?

[Luce24 in reply to JeanOsborne]

It was never very clear what happened during my surgery. After I woke (still incredibly out of it) my consultant at the time came to see me and told me that yes I had it and that it may be difficult to have children so he would try and arrange IVF - he told me at that point that it was in my womb. It's taken 14 months for anyone to share the letter that he wrote to my GP following surgery which states I have adenomyosis in my womb. No one as yet has talked to me about what this may mean in relation to my ability to conceive and I am assuming nothing can be done to treat it. I think he burnt some of the endo away but the letter just states the womb felt heavy which indicates evidence of adenomyosis. 

I haven't been seen by the team as yet. My appointment is the 11th May. They too seem to be focusing on the fertility issues because of my age. They are talking about trying me on some meds to increase the number of eggs I release each month in the hope that this may help me conceive naturally, but I honestly don't even know if this is possible. I also want to feel well and know that my endo is being well managed. I really feel as if I have no real idea of what is happening inside.

I'm so sorry that they weren't able to help you in time. I know I would be devastated with that outcome. I hope you have recovered well physically and that emotionally you are coming to terms with events. I hope that the surgery has at least meant that you live a relatively pain free life.

Strangely I don't tend to experience pain from the endo any other time than during my period. I do experience bloating and a very heavy dragging feeling throughout the month & all the other bladder issues & exhaustion. 

Thank you so much for replying. It helps to know there are others out there. Xxx

[JeanOsborne in reply to Luce24]

Hi Luce, unfortunately the only cure for adenomyosis is hysterectomy. I might be worth trying to get the op report as that will tell you what was done in previous lap. 

Thorough excision with a specialist would probably increase your chances of ttc but no guarantee because of adenomyosis. I  have heard of women conceiving with adenomyosis, so don't give up on that.

Let us know how you get on , on the 11th.

Take care.