Endometriosis UK

Concerned partner

Hi everyone, I'm new here and I was just looking for some advice. My girlfriend was finally diagnosed with Endo earlier this year (after a five years of being told it was all sorts by various doctors) she had a laparoscopy three months ago in which they found two patches of Endo and got rid of it. After the recovery period from the operation she felt like her symptoms from the Endo had gone and she had two really good months of being pretty much pain free.

However these past couple of weeks the Endo symptoms have returned again and shes in a lot of pain again which is taking a toll on her mental health, as all she wants to do is feel like a 'normal' 22 year old. As now it feels like shes right back to square one, basically I was wondering if anyone has any advice of where to go from here? My girlfriend is currently taking the pill non stop but she hates it due to the side effects is there a way forward from here in maybe getting the coil or something else?

I'm just concerned as shes not coping well, I've suggested posting on this site so she can talk to people with the condition and calling the advice line but she just doesn't want to talk to anyone else and then she shuts down on me. I don't suppose anyone has any ideas as to how I can help? as it breaks my heart to see her like this.

Apologies for the long message and thank you for your time xx

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If she doesn’t want to reach out to others there isn’t much you can do. Being there for her through it all is the best thing you can do.

She may need different treatment options that work better for her, but again it’s up to her to make the choice to do so. It’s a real fight to get proper treatment at times so it’s easy to get discouraged, so any amount of support from you will definitely help. My fiancé is super supportive and understanding and it means the world to me.

I’m 21 and I understand wanting to feel normal. It took me quite a few different pills to find one that helps me. It seems to all be trial and error as this disease isn’t well studied. I’m having yet another surgery to figure out what is currently going wrong (they’re checking for more endo and taking my appendix out, this will be my 3rd surgery since August this year.) If I didn’t have the love and support from my fiancé and family I don’t know what I’d do or if I’d be able to get through all of this.

Good luck to you both and I hope she gets the help she needs sooner rather than later.

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Unfortunately there’s no cure for endo so it can come back. She could try a progesterone only pill that worked for me. It doesn’t have as much side effects as the combined pill. She could also try the mirena coil.

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Honestly, you are doing so much for her just by taking an interest and caring and trying to understand her illness. To post on here shows that you understand how much she suffers which is a lot more than most people I know. Support makes such a difference. There's an app called my endometriosis team which is a lot less formal than most sites i've been on so that might be better for her? She could also just read through and not post herself, it really helps to see this isn't just you. If you show her this post tell her to feel free to message me any time if she needs someone to vent to in a more private way. Some people just don't like posting about their lives which is understandable.

But as for you, you're trying your best to be there and that's all you can do. Keep doing what you're doing. Even if she doesn't always show it, it means the world to her! X

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Firstly, I think it’s lovely that you took the time to post and are so concerned for her. Having a supportive partner is so important, like I genuinely don’t know what I would have done without mine at times. I have seen relationships break down as a result of Endo so I think it’s really important for her to know you’re there for - especially if you feel that she may be shutting down.

Unfortunately, with Endo there is always that probability that it will come back, although I understand her frustration that it has happened so quickly. I also only got a matter of weeks of relief from symptoms after my lap (although Endo still isn’t confined yet) and honestly I think that was worse than if it hadn’t gone away at all because you build your hopes up that it’s finally gone. I’m 25, so a couple of years older, but have been suffering since I was around 15 so I get that feeling of wanting to feel “normal”. It’s the little things like not being able to make plans or go out without thinking of a backup plan for if you’re not well, having to cancel all the time and losing so called “friends” because they don’t understand, generally just feeling like you can’t enjoy your life when really this is when you should be doing it the most!

I also took the pill continuously but am now on the coil (got it in June during my lap). Personally I’ve found this ok, better pain wise than what the pill was for me. And I don’t really have many side effects. Don’t get me wrong, (and I’m gonna apologise in advance for the whole load of info coming you’re way right now that you will most likely not want to hear 😂) I did end up bleeding for about 6 weeks after first getting it and do still occasionally get clots with it..... but on the plus side, no period as such. So it’s helped control that side which was a massive bonus as I used to bleed pretty much every day to some extent while on the pill. If it’s something she’s considering, then just make sure she’s aware that it can take a good 3-6 months to settle down. I considered getting mine out about a month in but stuck it out a bit longer and feeling like it’s settled. It hasn’t taken my pain away (unfortunately!) and I’m still in pain every day but this wouldn’t have been any different on the pill or something similar.

A lot of women on here have tried the Endo diet and found that to be quite helpful, personally it didn’t work for me but I’m glad I tried it. She could perhaps look into this? It’s all focused around anti-inflammatory foods.

One other thing that I have only tried recently but would highly recommend to anyone struggling is actually counselling. I really struggle sometimes coping mentally with it; between the pain, the exhaustion, the frustration, the not knowing what’s happening, plus some other reasons, I just had to speak with someone. I was so emotional. Your girlfriend might not quite be at that stage yet if she doesn’t want to talk to anyone but it might be worth broaching the subject and seeing what she thinks. It’s honestly really helped me, even down to helping me find techniques to help me relax a little when I’m having a worse pain day and that also helps me sleep.

I’ve just realised this is more of an essay than a quick reply lol, so I’ll leave it at that. But if your girlfriend does feel like she wants to talk one day then I’ve always found this board very welcoming and helpful, and the few times any members have either sent me a PM or I’ve sent them one it’s honestly been so friendly.

You’re doing great just being there for her (even though I know it’ll be hard on you too), so keep it up and it’ll be worth more than you think to her xx

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Hay hun, respect to you first and formost for posting and showing your concern, as everyone has already said support and understanding from a loved one or partner is the best medicine so far, endo is a bad thing and involves so many things, not just pain and problem periods but it affects you in different ways everyday, most of all it plays with your feelings and emotions, the un nowing how your gonna feel from one day to the next is so depressing and some days you dont want to get up at all, the pill, the coil, a hysterectomy all these things help with periods and can sometimes settle problems in the short term but i dont think you fully get rid of endo, i had severe endo 10 years ago and after a couple of opps removing body parts i thought thankfully the nightmare is over, but no, over the years it gradualy came back and im now suffering now more than ever, it takes alot linger to get help and im 10 years older so seems like my body is suffering more, it never goes away, your suppirt to your partner will mean so much and will keep your relationship strong, you will never fully no how or what she is feeling but the understanding will mean more than you can imagine, keep it up your amazing, and hope your partner finds a way to open up, keeping things to urself never helps but fully understand what she is going through.

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If she has a coil, the mirena coil is best, as it is progesterone only. It is the excess oestrogen that is causing the Endo problem, so the progesterone from the coil helps to counter this. Also, having the coil near where it is needed means that lower doses can do the work, so it is all much healthier for the system. For the same reason, it is doubly better than the progesterone-only pill, as this is higher dose, and has to pass all through the body and be broken down by the liver: mean while the coil delivers directly.

I had one in my 50s, after I had been told I had to stop taking the pill: my pains were becoming horrendous. It worked for me and was the best thing ever. Not everyone takes to it, and it doesn't work for everyone, but it is worth a try.

You are a true friend and partner to her, posting on here and asking for help on her behalf. My partner was there for me too, so well done. I was lucky in that the pill had worked for me for most of my life; but, once I had to stop it, I was just so sick of trying things that didn't work that I could not face more futile searches and attempts. So she is very lucky.

Hope this helps.

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Personally taking the combined pill constantly actually made my endo worse and I dont think its healthy to do for a long time 😮 I had the coil put in over a month ago apart from the random bleeding it eased up my periods so much and I'm also only 20 years old and never had a kid (because some people say it doesnt work as well and is more painful for women who havent had kids or are young) 😮

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