I'm sorry to the lovely people on here who I have not yet replied to in recent months. I'm really struggling. I have been suppressing my anguish but today I feel like I might explode. I hope you don't mind if I use this forum to spill. I'm struggling to find true understanding anywhere else. How can anyone , even those closest to me can't understand my pain
Brief history...
Years of being labelled with IBS
2011 cyst on ovary found on u/s
6 months being told it would go away
Got married
September 2012 started TTC for baby
January 2013 m/c 5 weeks
July 2013 chocolate cyst removed, pain goes, endo confirmed
January 2014 m/c 5 weeks
May 2014 find out hubby has bad sperm morphology issues
June 2014 pay £8000 to have total peritoneal excision of endo - praying for a cure
June - July 2014 - horrendous recovery
Sept 2014 - m/c 5 weeks
Sept - nov 2014 - relatively painless period, back to gym, feeling good
Dec 2014 - investigation for early miscarriages. Diagnosed with adenomyosis, awaiting for Nk cell tests to come back. Also issues with bladder
Jan 2015 - horrendous period. Pains down legs, in back, in bottom. Feeling low.
So hear I am, I trail of painful experiences, waiting to start IVF next month. The pain this month is crippling. I feel I'm half of what I used to be. I'm struggling to be happy, I'm struggling at work, I'm losing sight of motherhood. I'm 28 with a diseasing uterus, chronic pain and I am childless when all my friends around me are embarking on the joys of parenthood. I'm not even on the property ladder any more as all my funds have been spent on treatments.
I only can think to myself at this point in my life, what did I do to deserve this pain.
Written by
Jdgirl030
To view profiles and participate in discussions please or .
You did nothing to deserve this, you are an amazingly strong woman who has endured all this and although your in pain, you are still here and still fighting for what u want. Don't forget that you are strong and that you know your body better than anyone xxx
You didn't do anything to deserve this. None of us did. I'm also having a hard time at the moment with this.
I know this isn't much comfort but we have to believe that things will get better. At least we are living in a time where there is some treatment for these issues even if there isn't a cure.
It sounds as if you are getting things done and working through it.
Please message me if you want if you want to chat to someone who understands. That's one of the things that I find hard, the fact that noone except another endo sufferer understands.
Sorry to hear of yr troubles. What a long frustrating, painful journey you'd had in the last few years. I was fobbed off with IBS initially too! So bad isn't it. In my case as I was nearly 39 and not able to conceive you really think the gp would have gone Ummm, this doesn't sound good and as yr nearly 40 let's get some tests done. But no! It took breaking down with another gp to finally be sent for scan, which showed endo everywhere! Two laps later. I then had to pay for private IVF, so know how you feel about having to pay for treatment. Makes you bit angry when you've worked and paid into this country all yr life
Anyway there's an age 40 cut off point for Ivf in most places so that's why I had to pay. The endo had messed up my insides so badly that I couldn't even use my own eggs for Ivf, had to use donor eggs. The first attempt worked but I did miscarry at 6 weeks. I Also have adenomyosis too, but I was told it could have been anything that caused the miscarriage. Did they say that was probably what DID cause yrs? What is the NK cell test? Would be interested to hear.
Anyway please don't be too hard on yourself. Yes you've had a terrible time but you got through it and you will get through the next hurdle too. Having to deal with all this crap we have to, just makes you stronger to achieve what you want. Even if it doesn't feel like that some days. The problem is constant pain makes you feel fed up and low, I know.
Good luck with your treatment and I really hope it works for you. Stay strong. Xx
NK cells are Natural Killer cells which form part of the immune system's initial rapid response to a threat or something it perceives as a threat. Women who experience repeated miscarriages often have a high NK cell count. However, women with endo usually have reduced NK cells in their peritoneal fluid. From reading various things online I don't feel a serum blood test reveals the true NK cell situation as I believe that the reading can be different depending on the part of the body being considered. In the case of miscarriage investigation, it is preferable to test a sample from the uterus in my view.
The 'treatment' for increased NK cells seems to include immunosuppressants and is still experimental. Personally I wouldn't wish to take something that compromises my immune system but that's just my choice!
Thanks for the info. Worrying thought isn't it?! My clinic said my uterus all looked fine when they did a scan before treatment. But what may look fine on the surface, isn't necessarily the case deep within. I will mention it to them, but as they haven't brought it up maybe they're not concerned. But then I've only had one miscarriage, my second frozen embryo transfer is in Feb. But if it doesn't work this time it may be the end of it all for us as I doubt we'll be able to afford any more treatments. It's so expensive. So a lot riding on next go for sure
I came across this overview which confirms what I thought about NK cells in the uterus being different to blood serum NK cells. hfea.gov.uk/fertility-treat...
"Uterine NK cells are not found in the blood. They occur only in the lining of the womb during early pregnancy, while the embryo is implanting itself there and the placenta is developing. Therefore some doctors and scientists strongly doubt whether any meaningful information about uterine NK cells can be obtained from a blood sample."
Worrying for sure. Particularly as it's saying the cells attack embryo as genetically different, as in my case it's not just my husbands genes but also my donors, as had to use a donor egg! So its even more of a "foreign body"
Thanks for the link. Maybe helpful for jdgirl and others too x
What a difficult, heart breaking journey for you. It is no wonder you are feeling so overwhelmed. I just wondered if you had thought about having some therapy or counselling to help? Don't give up hope, so many women have gone on to have children despite such hurdles, you are still really young. You sound like such a strong, determined woman who I'm sure will get through this. You just need to allow yourself to grieve for the losses you have experienced as this is really important in your recovery. Take care and sending positive thoughts as a mum of children conceived despite severe endo and through donor sperm x
What a difficult, heart breaking journey for you. It is no wonder you are feeling so overwhelmed. I just wondered if you had thought about having some therapy or counselling to help? Don't give up hope, so many women have gone on to have children despite such hurdles, you are still really young. You sound like such a strong, determined woman who I'm sure will get through this. You just need to allow yourself to grieve for the losses you have experienced as this is really important in your recovery. Take care and sending positive thoughts as a mum of children conceived despite severe endo and through donor sperm x
What a difficult, heart breaking journey for you. It is no wonder you are feeling so overwhelmed. I just wondered if you had thought about having some therapy or counselling to help? Don't give up hope, so many women have gone on to have children despite such hurdles, you are still really young. You sound like such a strong, determined woman who I'm sure will get through this. You just need to allow yourself to grieve for the losses you have experienced as this is really important in your recovery. Take care and sending positive thoughts as a mum of children conceived despite severe endo and through donor sperm x
I don't know you but you bought a year to my eye. I am also 28 & my husband has the same sperm problem and he also has half the average count too. I also am worried about spending all this money on treatment. I am fortunate enough to have been given a wonderful little already however my heartache or the whole process is very raw and painful as it's just blow after blow and wait after wait.... If you need a chat always here. Let's prey Ivf will be your asneer I hope you get you dream soon x x
So sorry to hear about all you've been through. Just reading your history sounds like quite a roller coaster and for what it's worth, my feeling is that you need to slow things down a bit and give your body time to heal! Getting pregnant so soon after TPE surgery is a big ask when your body is trying to heal. I hope I don't sound like I'm criticising you - far from it.
Have you been in touch with your TPE surgeon again? The surgeon who treated you is highly skilled as I'm sure you know so I'm confident that he removed all the endo. It's so annoying but we all heal at different rates so perhaps it's a case of giving your body a chance to heal and do everything you can to support that. (I took 2 years to recover from one op!) You probably also know that some of us are prone to post op adhesions which also could explain your pain. You mention that you were recently diagnosed with adeno and this seems to be the most likely cause of your current problems. How was it diagnosed? Did you have an MRI?
But most importantly, I really recommend a book by the fab Aubree Daimler called From Pain to Peace with Endo. She documents her personal experience which I think will resonate with you but crucially she outlines all the strategies she used on her path to peace with endo.
I'm overwhelmed by your compassionate replies. Thank you so much they have really given me a lot of comfort. I have taken the day off work today and rested and I must say im feeling in a better place for it. I work in a caring profession and I must say I hate the way my energy towards helping others seems so hard to come by when I feel this way. It's exhausting. Then it makes me feel awful that I am failing in a career I love and have worked hard for. I just hope I can continue to show strength. Hearing all of your stories helps me to feel that I'm not on my own. I don't know anyone personally with this problem and although I wish all my friends health and happiness, it is hard and isolating to feel so alone. I guess that's why I start to ask "why me"?
I had the Nk cell uterine scratch biopsy and I still await the results. My adenomyosis is mild. I have only recently found out about it. Only 10% of women with endo will also have adeno. It has probably been one of the hardest things to digest. I can't help but catastrophise about each period by period destroying my precious womb. I think that is why conceiving seems more important than ever. I know it's not for everyone but having children means everything to me. I would trade every materialist item I own to hold my baby. Being so close yet so far is heart wrenching. I don't think i will ever feel joy from a positive pregnancy test again.
I'm not sure of the reasons for the miscarriages. I wonder whether if the Nk cell test is ok if it might be my adeno. Maybe it might be my husbands sperm though? I'm not sure if poor morphology might create an unviable embryo.
Does anyone know of any ivf groups for women with endo/adeno?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
does it matter if they operate while its your time of the month?
Really struggling this time. Sorry in advance for the essay!
Operation Cancelled, hard to cope 
Endometriosis heavy bleeding during periods time
Appointment waiting time!
