21 with Endometriosis, will things get better? Is this my life now?

[MeggH]

Hello,

So since early 2015 I've had these pains in my pelvic area and pain during sex, after a year of being placed on ridiculous amounts of drugs (Doctors way of fobbing you off when they don't know whats wrong), being told "Its all in your head" and being placed on many waiting lists I finally managed to get a laparoscopy beginning of April which confirmed I had a lot of mild endo. It was a relief to be diagnosed as I was believed and there was a reason for my pain, however I think you'd all agree that being told you have endo isn't exactly the greatest thing.

After the operation I lost some pain but where it was worse in the first place (left ovary area) it still remains. I don't take pills as the side effects made me sick and depressed and honestly don't remove any pain. As treatment (which there is none) I've been told to overlap the contraceptive pill for 6 months so I have 1 period a month, though I've already had a period despite overlapping.

I'm worried that my life will be a cycle of pain, operation, healing pain, endo pain, operation etc etc. I'm 21 (as of 2016) yet I don't feel it. I feel broken, old, and scared if I'm honest. I'm in a relationship (3 years) and this has been so difficult for it because my libido has obviously dropped but also I get pain with sex, not every time, and each time it may be more or less intense, but that is scary and being scared to have sex with your partner as a 21 year old...all my friends laugh and joke around about sex and all that are are so casual about it and I used to be the same but now talking about it makes me want to cry, and not all my friends know about my endo which makes it worse.

So I've lost the ability to have enjoyable sex it seems, which makes both me and my partner feel crap and if our relationship doesn't work out how on earth am I supposed to have a relationship with someone else with this? So relationships are going to be difficult my entire life.I feel so guilty about being with my partner as he could be with anyone else my age who isn't broken and he wouldn't have to worry. He's 21 years old and stuck in a sexless relationship, I have nothing to offer him and I know it and that thought pains me every day.

Then theres the fertility problems...I want children someday, but I'm so scared I won't be able to. And having children requires me to be able to be with someone who can deal with my pain and understand.

I'm young, my life is about to begin properly and endo is ruining it, I feel so broken, so inadequate, and outcast from my age group because I can't be that fun 21 year old any more because I'm not, I'm in pain, hurting, 24/7 which means I cant ignore it and theres the mental side of it where I feel so completely isolated and alone. I can't talk to any of my friends about it because they simply don't understand what it feels like and simply pity me instead.

I'm finding this so difficult and am trying to be positive and just get on with it ya know, because I refuse to let it ruin everything but its so difficult, and I can't forget about it or ignore it because the pain is always there and is a constant reminder.

I just want to know what to do with this so young knowing I'll have it for the rest of my life, knowing I'll have god knows how many operations, that my fertility might be compromised and that I may never be able to have a sexually enjoyable relationship, or even just a normal relationship without feeling like a broken person ever again. What can I do?

[Mulberry2016]

Sorry I can't be much help but I am 26 now, been diagnosed since I was 18 and I still feel exactly this! I totally understand what you are going through xxxx

[Flare]

Hi there, you're definitely not alone in this feeling. I'm 20 years old and have the same issue and fears. I've tried zoladex which is quite helpful. As for the pain during sex, I can totally relate. My gyne told me to try different positions to see what works and what doesn't.

Keep communicating with your partner about how you are feeling in terms of about the endometriosis, the pain, maybe for you to try things slower? Tell them your libido isn't what it once was.

Do you think your other half would attend appointments with you so the doctors can help them understand?

I saw someone had made a suggestion to someone else on here earlier about if their libido is low why not do other things like massages and take baths together?

It might be worth speaking to your GP about how this is affecting you too, see if they can send you in the direction of someone to talk to about it?

I'm sorry you're going through this, it is really hard but I hope you'll get there.

Sending you a hug.

Take care <3

[MeggH in reply to Flare]

Thanks for such a lovely reply, despite the fact I wish no body else could feel this way its selfishly reassuring knowing I'm not the only one and that others understand. I'll mention Zoladex to my doctor next (which has to be tomorrow as not coping), are there any rough side effects? I keep avoiding the drugs as I have yet to have anything work and the side effects are just terrible!

I've been doing the different positions thing and found only 2 to work, but 2 is better than none. We communicate well, but I still think its hard for him to fully understand. I think he thinks one day I will get better and be back to my normal self, but that day will never come and I know that and it hurts to watch him slowly realise it as much as it hurts to accept it myself.

We do baths and massages and things that are intimate but not sex but I still can't shake the guilt of not being able to give him more, even though I know its not my fault. Its just difficult knowing most others my age could give him that. And of course I know that he would like to have sex, even when he tells me its okay I can't quite believe him, which I know is my problem, but a problem I feel stems from truths :/

He's happy to come to appointments but its a clash of timings with us both being busy at different times.Thanks for the advice, I think I'm going to ask the doctors if theres anybody I can talk to about this.

Thanks again, take care too xx

[MeggH]

Hey, I'm in Exeter, Devon x

[MeggH]

I'm really glad this is working for you! Thank you so much for sharing I'm definitely going to be getting that book and trying that out! Any route thats not a drug route I'm more than up for as the side effects of drugs are always really awful!

I hope this continues to work for you! Many thanks xx

[EndoHubby]

Hi Meghh. I am sorry to hear that you are going through all this .

My wife has just been diagnosed with possible adenomyosis and I can understand what you are saying since a lot of your concerns are hers as well

All i can tell you is that it is possible to have really happy relationships. You will just need to find your own rythm and compromises.

I am out here trying to find possible ways to lessen her pain and anticipate her needs and i am sure your partner feels as helpless as me when he sees you in pain. I hope you both get through this and come out stronger.

Did you consider laproscopy?

[MeggH in reply to EndoHubby]

Hello,

I'm sorry to hear about your partner! I hope things will end up okay for you two. I've had a laproscopy but its not done much for the pain which has already returned (had lapro in april), i have another appointment at the hospital hopefully within the next few months.

I've just started on a new pill for pain which seems to be working with very few side effects - its Dihydrocodeine.

All the best, xx

[EndoHubby in reply to MeggH]

i have heard good things on internet MRGFUS. Do ask your GP/Doc about it. It might be helpful

[Natalex]

Everything that you are currently feeling is to be expected, after 10 years of struggling and finally getting the answer at 25 I fully understand how it feels from the relief of finally having a diagnosis to the upset of it being a long term condition.

its difficult but please don't sign off on your relationship/ future relationship and wants in life. I can remember wanting to go out and still no do things which we have had to cancel due to me having a flare up or I've ended up suffering from going out and enjoying myself- try not to beat yourself up about it, I find the more I dig at myself the worse I feel and therefore have to at times put myself and health first.

The conversation and feeling towards sex- been there. My partner is very supportive but there where times before my diagnosis he would think I would be okay if i tried to relax, when we saw the consultant be actually got very upset with saying that to me on occasions but it's a learning curve! It's something new that you face together. Foreplay is key to put it bluntly and sometimes full blown sex is not required. I tend to prep myself for a flare up, heat or ice pack, pain relief and I have found on times it's not painful where as others I've been in tears.

Try not to jump ahead with the fertility, I did the same and well if the worst comes to worst as my partner said to me - you'll have a family one way or another. And well we have just got married and I can tell you in the short 18months he has known me my endo was at its worst!

Concentrate on yourself, your health and the things that work for you. That could be cutting out foods, managing pain etc.

Really feel for you lovely but I promise you it's not all bad- and if you see my first post on here I was feeling exactly like you xx