I'm a 52 year old mum to a 24 year old daughter who suffers terribly with endometriosis. She was also born with a unicornuate uterus with a rudimentary horn. She's tried all sorts of treatments over the past 3 years without much success, she's now looking at a hysterectomy. Her endometriosis specialist has said it needs 2 gynaecologists and a physcologist to confirm that she's ready for it. She's had ten years of nothing but pain ,not being believed, missing her education and being sacked by a vile male boss who referrered to it as women's problems.
She knows the implications of an oopherectomy, will have to take HRT and testosterone, and won't be able to have children. But the unicornuate uterus is a problem in itself, and she could spontaneously abort right up to 6 months gestation. There is only a 40% chance of a live birth.
She has conveyed to the gynaecologist that she has had enough, we'd been trying to get answers since she was 14, and just fobbed off. She wants a life herself and has missed out on so much. She can't work full time due to her problems and certainly wouldn't have the energy to look after a baby.
It's been really difficult for her dad and myself to see her suffer so much and can only hope that some day soon her life will get better.
Has anyone else out there got a unicornuate uterus as well as endometriosis? We can't find any information and she feels so alone.
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Clarice123
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Firstly I want to say how sorry I am for your daughter having such a terrible time.
I was diagnosed with the same, a unicornuate uterus with rudimentary horn as well as endo when I was 20. I have battled with 4 years of infertility, 2 years of IVF. I was successful and gave birth to my son last Sept however, he was born 3 months premature. After a long NICU journey though, he is home, safe and sound and thriving. UU has very worrying stats for pregnancy and birth and I unfortunately fell into the not so good outcomes in regards to fertility and preterm labour.
I have loved with pain for a long time, however, I do feel my pain is manageable so I guess I’m quite lucky there.
Has your daughter had any treatment to remove the endo?
She has had it removed twice, taken Zoladex, had a coil fitted which had to be removed as it had moved., tried various pills. The gynaecologist said even with the small coil Kyleena it was a squeeze.
She has just tried Utrogestan which I have had for the menopause. She is like myself very sensitive to progesterone, really bad side affects.
They have just done an MRI to look for adenomyosis, which would explain the constant pain in her uterus. Nothing showed up, but he explained that if there was lots of small bits they wouldn’t show. The Zoladex, although the side effects were awful it did stop the uterus pain. It’s quite possibly adenomyosis.
Her pain is no longer manageable, it escalated 3 years ago and we paid for her to see a BSGE specialist as our local hospital was totally inept.
She has simply had enough, she’s exhausted. The coil has given her terrible acne, she had such lovely skin before it, and her mood was horrendous. I’m pretty much the same mood wise with progesterone. I believe they use the Utrogestan during fertility treatment as well as HRT.
My poor husband has two of us going mad 🤪. I’m just coming off Utrogestan, it’s sending me bonkers, I can’t stop crying, I’m anxious and don’t want to be here. But I know that after 5 days clear of it I’ll feel better. Flipping hormones, us poor women get such a rough deal.
My gran always said she’s coming back as a man, I know why now .
It’s lovely that you have a healthy little boy. Cherish him and enjoy the early years, they soon grow up, xx
I'm so sorry for what your daughter is going through. I had never heard of that condition, so I Googled it. I've had female issues. That's probably a poor term, since I'm referring to medical maladies. That misogynistic jerk of a boss should be reported.
Because of the pain and issues I had, I can empathize. I was told that I could never carry a baby to full term, but God Blessed me with my daughter. Though that was after 4 miscarriages and one after her.
Honestly though, when I had issues with my ovaries, the pain was so horrific I can't imagine suffering 2 years with that. It sounds like you and daughter have considered the options and are making the best decision for her. I will keep you both in my prayers.
Thank you so much. I just want her to enjoy life, it’s been pretty crappy for the last 10 years.
The female gynaecologist we saw agreed that it had been going on for far too long. It’s affected every part of her life. Holidays, work, socialising, you name it, it’s affected it. I only have her, which after having endometriosis I was told I could have problems conceiving.
Because of the way she was treated at school by the Head of Year, then work, it has affected her mentally as well. She was so confident as a youngster. She’s even been let down by the medical profession as well, and has suffered panic attacks due to a G.Ps mistake in not letting her know that she had a post surgery infection.
I’d taken her to A&E 5 times in the 10 days that the Dr had forgotten to tick a box for admin to inform her that the swab results had detected an infection and needed antibiotics.
The panic attack she had scared the living daylights out of me. I held the nurses hands and begged her to see my daughter quickly, her lips were blue, she was shaking and her heart was racing. Her body couldn’t take any more. All down to the Dr making an error. As you can imagine I wrote a letter of complaint, but the damage is done. She did profusely apologise, but she could have killed her.
Then the Dr offered her antidepressants for her anxiety, unbelievable!! And since the uterus infection her pain became much worse.
I’m getting to a stage where I think I need some counselling, it’s been so full on. It’s always been me that’s with her as she wants her mum, I’m emotionally exhausted. It doesn’t help that I have M.S. My daughter knows it’s a drain on my energy and keeps apologising. I always reassure her that she isn’t a burden and that I’ll survive.
Sorry to go on so much, it’s probably the menopause, I’m feeling very emotional some days. I don’t have Facebook and don’t want it, but have had some lovely support from lots of kind people who know what that pain feels like. Fingers crossed for the oopherectomy, she can move on and then we’ll both be on HRT 🤪, bless her.
I am so so sorry to read all of this. What a supermum you are. What and incredibly brave daughter you have too. I’m sorry I don’t at all have an answer, but through all my struggles these passed 8 years I was being super brave and then it all started to get too much and I (a non-spiritual person) found myself at 34 years old sat in a church balling my eyes out for a few sundays in a row and then a regular attendee lady sat next to me one time and prayed over me and told me something was going on in my womb... I thought she’s sweet but nuts because I ‘only’ get period pain and iv been told it’s ME/CFS , but over the next few months my period pain then got incredibly worse and I was throwing up and passing out... so I went to the docs, then a gyny, and was told I have endo. So the sweet church lady was right!!
I’m not at all trying to turn you into a Christian/spiritual person, but you sound like this is all too much for both you and your daughter at times too... and I don’t know how things work but maybe there is something in church/spiritual stuff. I got to the point that I was so low and didn’t care how I got help so I sat in a church Feeling like a wally. There are such kind people there who will at the very least fill you with love and support through all this (they also massively believe in healing miracles but not always miraculous and sometimes step by step, and I find that positivity helpful and calming when I’m lost, even though I don’t really understand any of it). maybe something could click and help you guys? I don’t really know and sorry if it’s inappropriate to suggest that, but they’ve been more of a blessing to me than the docs so I just thought I’d mention it. I found (and still do a bit) God-stuff quite scary but iv been honest about that and they help me in so many ways regardless. If I hadn’t gone I would have just kept the CFS label and not now start to deal with the endo... I would have had no idea and carried on just thinking I was a wimp with my periods and a lazy person. Your daughter doesn’t deserve any of this (neither do you) she is too young to have gone through all that she has. People there will help you physically with support, mentally and lovingly without judging either... maybe they can help, they have gone above and beyond for me. Really kind humans in action and words, I’m so glad I went there and can still lean on them. No worries at all if you don’t. It’s your lives and your choices. I just wanted to say because not knowing what to do is heartbreaking along these health journeys... and their kindness and faith and patience to me (a complete stranger) has blown my mind. Real community people.
As a brief background... I was diagnosed with ME/CFS in 2014 after going to the docs for 2 years about pain and fatigue, and only just (2019) been told it’s actually endo. If that church lady hadn’t have told me something was going on in my womb whilst I blubbed my eyes out... I think I would have lost the plot with it all. I don’t know how she knew... but the docs don’t seem to know much all the time and fobbed me off so much... she didn’t, she was there for me. I desperately opened my mind to try something I never ever would otherwise and now I’m starting to get the real problem assessed. I don’t know if maybe something like that would help you with guidance?! Or at least support.
Sending love and I will pray for you guys. I hope you cry when you need to, let it all out and are kind to yourselves and find ways to see there is always hope... even if it’s not church and there are other ways that you haven’t tried that feel a bit odd... I’d highly recommend being open to giving such things a go. I tried any and everything... before crying in a church. That was the last thing I ever thought I’d try. You sound like such a beautiful mum, you and your daughter are so lucky to have eachother... I hope you find some peace ASAP. xxx
Wow, that is so powerful and moving. Funny but my next door neighbour is a Vicar and she prays for us. In fact I want her to bless our house as ornaments keep falling on the floor, and move positions, weird.
She had her boss speak to her yesterday as she's had 4 days off sick in 7 months. They knew from the beginning about her condition. She doesn't beleive that it can be that painful, and started comparing her miscarriages to my daughters problems, then had the audacity to tell her she's too young for a hysterectomy and perhaps the endo would subside in time. She doesn't get sick pay, is on morphine for the pain and the silly cow tells her of her own issues. I want to rip her head off.
My daughter has access to her medical records online, I've advised her to print off some of the information to prove to the mare who runs the local MOLLY MAID that it's real. I don't believe they have a HR department as its a franchise model. She'd been unable to work for over two years and was demoralised. So she decided to do something that she loves, I hate cleaning but she adores it. Employers still don't understand the complexity of this disease. I worked for BT 25 years ago when I had endo, and it was problematic.
It's really hard living with this awful condition, no one understands unless they've had it. I realise just how lucky I was all those years ago. I had Danazol for 9 months, came off it for 4 months then became pregnant. After the birth of my daughter it had gone never to return!
How do people get on with work and having to have days off due to the condition??
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Another update after diagnostic with TPPE specialist and feeling a bit emotional.
Grade four endometriosis 
2 years in and we're still faffing about
Lap op tomorrow 
Endometriosis- tracking apps??
