Seeking advice : Hi all I'm simply a... - Endometriosis UK

Endometriosis UK

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Seeking advice

Conorsauer22
Conorsauer22

Hi all I'm simply a partner looking to help his girlfriend she suffers with endometriosis and has recently been diagnosed, it causes her great distress and puts her through a lot of pain, as her partner and her best friend I can't stand to see her in this pain she is only on contraception at moment as the Dr's aren't listening even though they recently diagnosed her, help and advice needed please it'd be great fully appreciated

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Hi,

It’s lovely to see you’re on here trying to help her out. My biggest bits of advice would be to keep a pain/period diary because a GP can then actually see what’s going on & also don’t give up. If a doc says nothing we can do - go to another. If some tablets don’t work or stop working then go back. It feels like it’s a hassle but no two people with endo are the same, what works for me might not for your gf.

I wish you both all the best

Thank you very much this response has been amazing your all so lovely thank you all for the advice and kind words

Firstly, you are a breath of fresh air! , it is so wonderful to hear a supportive partner, unfortunately I don't have any advice as I don't have endometriosis, but I am sure there are plenty of ladies on here who have endometriosis who will be able to give you pointers

Years ago when I was 30 , I worked with a girl who had it diagnosed ( she was 28) she was told all sorts by specialists etc..

She was told she would not conceive ever ( and she was absolutely gutted )

Fast forward 4 years... and at 32 she gave birth to a happy healthy daughter, she was over the moon

Thank you for the kind words and advice but truly I'm nothing special I'm just here to see what I can do for my partner and to help her and hopefully our story will help others too.

Hi

I read your post and told my OH and asked what advice he would give he has said first and foremost Patience! Ladies with endo are mostly a rollercoaster we have good and bad days and its not our fault. If you have plans and she is having a bad day dont make her feel bad as she is not doing it on purpose!! Its different for ever lady, when I get really down with it all I ask my OH for comfort but dont want to be smothered sometimes just rubbing my back or holding my hand is enough. From my perspective communication is key get her to tell you what she needs or wants and sometimes if she doesnt know just try and make those small choices my example was today I felt so crap have been in bed most of the day my OH came home and asked me what to do for dinner and I just couldnt focus so he sorted it, got me more tablets and hot water bottle and just talked to me about his day it really helped.

I dont know what stage your OH is at but just remind her that this is not her fault! In regards to sex life it may be rubbish for a while but it all depends where her endo is and what treatment she is having but tell the gp if it is affecting it as this is all info they need.

In regards to medical stuff I would really encorage go to the appts with her as you can explain to the gp your views as they take it into account as sometimes we cant think of it all in a 20 min appt. Make sure you keep an eye on her tablets,sleeping patterns etc. I know it seems a lot but it really helps as my OH says a problem shared is a problem halved!

I really wish you and your OH all the best and remember its not just her it affects its hard work on the partner and famoly as you have to see your loved one in pain when there is not much you can do. Support,communication and patience is key though. ( and Lots of hot water bottles as well😉!!)

Hi there, if she is on the pill and it’s not helping, try another one. Usualky combined pills work better but mono pills can do the trick for a while. If its too bad she myst be recerred to a specialist and will be advised a laparosopy to diagnose and remove the endometriosis. All that happened to me. Surgery is good as it removes it but it comes back. So she will advised the coil insertion during surgery, which I shoukd have done myself. I regret not to as Im back to square one now. Will get that coil fitted asap, apparently it hells a lot! Good luck and please if a doctor is not litening go see another. You must be recetred to a gynaecologist asap.

Sorry for lissplella, it read helps a lot! 😊 and listening..referred.. should.. x

Mispellings. Bloody keyboard. 🙈🙈🙈

Gluten free and dairy free is the BEST remedy for this illness it will take a few months but the benefits are unreal :)

You're a truly wonderful partner to care so much. Just keep insisting on further help..diet helps and so does homeopathy..be sympathetic and have lots of love and patience x

I recommend heat pads, hot water bottles, Naproxen and co-codamol. I also gave up gluten and dairy and that has really helped. I realised how much gluten was having an affect when I was in terrible pain on a holiday to Italy where I was eating tons of pasta and bread.

Being supportive is honestly one of the best things you can do! Let her vent, yell, cry, etc. when she needs to. Maybe offer to go with her to doctor appointments for moral support. Honestly if you care enough to be on here asking for advice, you're doing great already!

As for advice for her, look into going to a fertility specialist who also works with endo. I went through 9 gynecologists in 4 years, all of whom either blatantly ignored my pain or half heartedly diagnosed me with endo and just put me on contraceptives (which did nothing for me). I finally found a fertility specialist who has a lot of experience with endometriosis and laparoscopic surgery. She was my lifesaver. Endo is one of the leading causes of infertility in women, so it makes sense that fertility specialists would have more experience with it than normal OBGYNs.

I also saw that someone else mentioned keeping a period journal, and I second that! It's harder for doctors to ignore you when you come in with documented proof of your pain. I personally started tracking what days I bled, how much I bled, how severe my cramps were (I did a 1-5 pain scale), nausea, vomiting, if I blacked out, headaches, etc. I also tracked every medication I took, whether prescribed or over the counter. I did mine in my bullet journal, but there are apps out there that help you track that stuff, too. Clue is a popular one, just make sure it's saving all of your data.

Good luck to y'all!

Thank you my friend I just wish to help her through this there has been times where she has been in so much pain she gets so angry at every thing but I always manage to help her calm down and to comfort her, she truly is my world I want to propose to her one day, but at the moment I want to get her answers as no one is helping her or telling her what's wrong properly thank you for your kind words.

Thank you for your kind words and thanks for the advice it really means a lot to us,

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