Hello, I got diagnosed with endo at 17 years old. I’m now 24 and have had 3 surgeries for it. I have endo on my womb, vagina, & bowel. However this might have changed as my last surgery was 3 years ago. I have been on lots of diff contraceptives but struggle to find one that works well for my endo. I’m currently not on anything and haven’t been for 9 months now as wanted to see what I’d be like not on anything but my periods & pain is horrendous all throughout the month, especially around my period. I get awful side effects like upset stomach/constipation/bloating etc aswell, feel so drained and like nothing is working. There’s not a day that goes by that I don’t need to use my hot water bottle to ease pain and discomfort. And even that I end up burning myself as that’s the only way the pain actually dies down a little bit!! I’m thinking of trying progesterone only pill, as I don’t tend to have any bleeding when I’m on this. And feel if I stop my periods temporarily that might help with some of my symptoms. I am wanting to try for a baby in the next 2 years so don’t want to affect my fertility by my endo getting worse. Does anyone have any advice or suggestions for me? Feeling really deflated and down just want to suppress my symptoms as much as possible 
What contraception works best for pain ? - Endometriosis UK
What contraception works best for pain ?
I'm 17 and I have tried the pill but my body severely reacts to both types so I understand the frustration. I'm waiting for gyncology and gastricnology. Sorry to hear things have be so tricky. Are you under a consultant? If the last one was rubbish you can ask to be referred somewhere else I believe. I don't really know much about fertility as I don't want a bio kid, but know that it does not define your value.
Ah I’m sorry to hear that! I’ve had a nightmare with consultants! I was under a consultant and I had to fight to have my operation at 17. Suffered for years prior to that aswell. I’ve broken down crying to a consultants begging them to help me but they always said that i wouldn’t have endo, until they finally operated and found loads!! I’m no longer under that consultant anymore as he was just awful to me! I’m not currently under a consultant as I lost all hope after my last op which was when I was 20. I do need to go back to see someone though, can I go to a different consultant or hospital under the NHS? I saw a gastro consultant and he gave me an MRI scan of my bowel and said it was endo related I’m sorry to hear you’re suffering to, I hope you get it all sorted ASAP!
If he said it was endo related why wasn’t the endo removed from your bowl if it was me I’d get on the list for op but try and time it for when your trying for a baby but please think Wisely the more ops you have the worse endo can get in some cases I would certainly try diet changes for now from my personal experience it changed my life pain wise I can’t say much about fertility
He said my gynaecologist had to deal with it, so when they operated on me my gyne said that he couldn’t remove it from my bowel as it was too deep and couldn’t be performed by laparoscopic surgery. But he didn’t offer me any other surgery and basically told me to try live with it! Yeah see that’s my worry I so young and already had 3 surgeries. It does worry me, it seems to be that my symptoms get really unbearable again about 2/3 years after an operation. I think I defo need to change my diet, I hope it makes a difference.
You are so young I’m so sorry if I was you I’d definitely make life changing decisions based on your diet.im only saying this because you would want to try not to have too many ops before you try for a baby as they may just send you straight for ivf and it be nice if you could try naturally do you know if your tubes are ok etc ?I don’t want to worry you maybe you could ttc a year then go for surgery .or go for surgery then try I’ve not had surgery for endo but I’ve had 2 open abdominal surgeries so I’m very careful I’ll be having one to treat endo if I don’t conceive within the next year and ttc and if it Dosent happen I will have to have ivf I really don’t have the money for it but my partner will be splitting it with me x
I know I feel so lost! I definitely think my first step is to make drastic changes to my diet and hopefully that will help with my pain. I believe my tubes are okay, well they was when I had my last op at 20. But I haven’t had any other checks since then so I’m unsure what’s okay and what’s not now. I just want all my reproductive organs to be okay, I worry so so much that I’m going to struggle to conceive. Ah I’m really sorry to hear about your surgeries, I’m praying for you that you conceive naturally. It’s so unfair, endo is such an awful disease!
I'm not stranger to fighting the system, but my paediatrion refered me to people who know about my other conditions so hopefully that will help! Also the gnygologyist works in both the kids hospital and the adults which will be helpful! I have a family history as well. I would be slightly worried about my bodies reaction to an operation but I'm willing to try anything at this point. (I'm complex, in many different ways and probably have over 30 professionals invoked in some capacity, also my body reacts weirdly and is sensitive to medications or they just don't work)
Ah bless you! I hope it all works out well for you. Thanks so much for your support xxx
I’m sorry to hear that you’re struggling with the pain despite having surgery 😔 I’m due a lap to determine whether I have endo as I have very similar symptoms to you including the upset tummy around my period. Since October I have been taking Yasmin which is a combined pill back to back as recommended by my consultant to help with the symptoms until I have my op. It’s significantly helped day to day compared to what it was like before...I had a break from it recently because you’re meant to have 4 breaks a year if you take it back to back and the symptoms were still really bad but it just helps that you have a period once every 3 months and not every month. My friend has confirmed endo and I found out the other day that she actually is on Yasmin too which helps manager her pain. I tried different mini pills and for me it was horrendous and I just bled constantly and it made my pain worse, which is why my consultant put me on the combined pill. Hope you find some relief xxx
I know it truly sucks aw I’m sorry you’re experiencing similar symptoms to me! It sucks!! I feel your pain. I can’t go on the combined pill unfortunately due to migraines so I’m only allowed on progesterone only contraception. Thank you for the advice though, really appreciate it. I hope you get it all sorted and find some relief too xxx
Can I just say there’s no guarantee the pill will shrink endo it’s only for pain and can still grow I had lots of new growth within 2 months on the pill.have you tried diet changes and vitamins I’m ttc aswell but the only way you can rid endo is through a lap which it can still grow back after I was like you with hot water bottle now I’m practically pain free from diet changes and vitamins I take aspirin daily for inflammation x
Oh no really! I didn’t know that so thank you! I have thought about diet changes yes, I’m just unsure on what I’m allowed and not allowed to eat if that makes sense? Certain foods and drink definitely trigger me but just tricky finding out what. I know gluten and dairy is a big one for me!!! I take a women’s health multi vitamin daily, is there any others your suggest? Yeah I know I was pain free for a year after my last lap but it seems to be getting worse and worse as time goes on again which is what happened last time! I just really don’t want to keep having surgery, but I might have to consider it again. Thank you for your advice and I hope you conceive xxx
I completely sympathise with you. I’m 24 next month, had symptoms of endo since I was 15 but only just got diagnosed through lap in January of this year. I’ve had no end of battles with different contraception to the point I’m not on anything at the minute. I’ve just been prescribed a stronger dose of codiene to help me deal with my pain as no pain killers do anything for me. It’s so hard to be heard and understood sometimes! The doctor was battling for me to go back on contraception but similar as you I’m trying for a baby. I hope you find some relief soon! I completely sympathise with how you are feeling as I am feeling the same after all my post op consults being cancelled etc. With everything going on I think that a general feeling of being pushed aside which definitely doesn’t help the deflated feeling endo gives us all when we are lost on what to do. Keep safe and well 💗
Ah I’m so sorry it took you that long to get a diagnosis ☹️ It’s horrible having endo, but at least now you have a diagnosis and reason why you’re in so much pain and have been suffering. I feel your pain with the contraception side of it, I honestly feel like nothing works well with our endo bodies. Yeah I take codeine for pain also, especially around period & ovulation, the pain is horrendous I’m crippled over rocking in pain! Hot water bottles are my saviour aswell 🙌🏼 Don’t worry girl, you’ve got this💪🏼 Hopefully you’ll get your answers soon, I’m always here if you want to talk, you can message me anytime I get exactly how you’re feeling. You’re not alone x
Thank you so much! Us endo girls got to stick together 🙌🏻💗 I’m here if you ever need someone to talk too, feel free to message me also. My mum bought me a heat belt and honestly it’s the best Christmas present I’ve ever had 😂 xx
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