Struggling with Endometriosis : I'm 21 and... - Endometriosis UK

Endometriosis UK
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Struggling with Endometriosis

Coffeebeann
Coffeebeann

I'm 21 and currently struggling for a diagnose for endometriosis. I have been struggling with lower back, abdominal and pelvic pain for 7 years and the doctor's don't seem to want to help. I have had a laporosocopy done and they found scarred tissue that had connected my abdominal wall to my bowel but refused to say it was endo as it had not attacked my reproductive organs. I ve continued to be in extreme pain and have regular heavy bleeding that is not my period and they don't know where it is actually coming from. My GP believes that the scarred tissue is deeper inside my bowel and bladder but doctor's refuse to treat me in any way as I'm not in any 'imminent danger'. I ve been violently sick with the pain quite a few times and I'm constantly tired. Does anyone know any way to help me? I'm really struggling with not only the doctor's but with daily living and any tips would be greatly appreciated!

14 Replies
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Keep going back to your gp, keep a pain/symptom diary, get referred to a BGSE if you aren’t already at one

Hi,

Thank you so much for your reply! Definitely a good idea that I ll start to do! What is BGSE? I ve never heard of that before x

Hey - I’m so sorry to read what you are going through, there are so many of us on this group that can empathise with you. I am 23 and had a similar experience (symptoms from age 13) and I was just diagnosed a few months ago. My advice to you would be to stand your ground, you have a right ask for a hospital referral to see Gynaecology. If you think your GP is denying you this referral, I would suggest you ask to see another GP in the practice or even better ask to speak to the Practice Manager and relay your concerns. Could you take someone with you to your next appointment such as a friend or family member to support you being firm with them? Where in the UK are you based? I only ask as most hospitals have an Endometriosis Specialist Nurse within their Obs/ Gynae departments, if you call your local hospital you may be able to get a contact number for that nurse who should support you getting help via the right channels. Sorry that you have suffered for so long and are having to fight just to be understood. I hope this helps.

Rachael x

Thank you so much for your reply! It is deeply appreciated. Im currently studying in Dundee and have recently just switched GP as my previous GP did not take me seriously and believed my pain was made up and didnt seemed too bothered about helping me. I ve been to Gynaecology several times and they have said that because they haven't found any scarred tissue stuck to my reproductive organs there's nothing they can do? I never even knew they had Endometriosis specialists! No doctors or GPs have said anything about this which is shocking. If they think it's what you ve got why do they not send you to these people? Yes I have a few people who might be able to come along with me, I ll definitely do this! Thank you so much for all your advice and I'm sorry you also have went through this for such a long time. It's absolutely horrible we have to suffer for so long before anything is done.

Chloe x

You’re welcome Chloe, would you be interested in joining an Endo UK (face to face) support group? If they have one in your area I can not recommend it enough, just because of all the advice you receive from others and the connections you make. I understand your position a bit more now, so they did one lap in which they ‘found no endometriosis’ and so hence are refusing to follow up? Don’t be disheartened, all the research shows it’s very hard to spot endometriosis in younger women and especially if the surgeon is not a specialist. I had my first (and only) laparoscopy in 2012 at the age of 16 and they found nothing but adhesions. I gave up and went away after being told they couldn’t do anything for me, and now I have Deep Infiltrating Endometriosis from the years it’s been allowed to get worse. I would get a new appointment ASAP, take someone as support, quote the research and information available on Endo UK website and tell them you want to be re investigated. The only other option is to potentially pay for a private consultation depending on your financial situation of course, if you can get a specialist to confirm they would recommend another laparoscopy, you could take that clinical recommendation to your NHS Gynae.

I do hope things get better, I met two girls my age recently here in Berkshire and it’s been so great having them as support.

Rachael x

Hi Rachael,

Thank you so much again! I definitely would. It would be great to talk to people that understand what you're going through and can help provide advice and support so I ll look into it! Yes I had a laporosocopy in August this year and because the Consultant did not find anything wrong with my reproductive organs he believed I was fine and that I didn't need a follow up even though he himself did not know where the scarring had come from since I have never had any other surgery done in my life. However when I explained this to my new GP she said that was wrong and I should have had a follow up as it sounds like Endo I have got.

That's terrible! I'm so sorry to hear this. Are they doing anything to help you now? How are you able to go about your daily living? I'm glad you have people to support you, you been through so much.

Chloe x

Hi, sorry youre having such a crap time and that you’re having to deal with those doctors!! But I agree, definitely push for a referral to a hospital or even better, specialist if possible. It sounds cliche but I have definitely learnt through my endo that you do know your body better than anyone and you’re right not to ignore it. I see a specialist at Guildford who is amazing so you could possibly even phone them and ask if they have any recommendations for your local area. Its hard and its demoralising but just keep pushing, dont take no for an answer from your GP. Good luck x

Hi,

Thank you so much for your reply! It's absolutely terrible. I ve changed GP and been to A&E several times as the pain has been so bad that I ve been violently sick and feel I can't take any more. But when you get there they treat you terribly and feel like they ve done enough to help you when they give you painkillers and just send you on your way. I ve tried explaining to them that the pain comes back and I struggle on a daily basis to do even simple things like brush my teeth or shower without being in terrible pain. But all they say is that they ve done what they can and that sometimes women just experience abdominal pain and they never know what caused it! I ll definitely phone and ask and hopefully there is! Thank you so much for your help! X

MTL2008
MTL2008
in reply to Coffeebeann

Hi. I'm sorry you are experiencing all of this. I just want to tell you that when people say that it's normal to have abdominal pain that's not true. Doctors and nurses sometimes just want to minimize your pain by saying that it's normal. I wish you the best.

Coffeebeann
Coffeebeann
in reply to MTL2008

Hi,

Thank you! That's terrible that they do that, especially when they meant to help you. They done that when they found that my abdominal wall was attached to my bowel. A gynaecologist said that that was normal and everyone was born that way however when I spoke to my GP she said that was not true. You feel like all these doctors and specialists tell you different things and you dont know who to believe! X

As a second recommendation - I have found adjusting my diet really helpful, and there are people who have been able to manage their symptoms almost entirely by diet changes. Have a google for anti inflammatory diets, its a lottt to cut out depending on what your diet is now but for example, I found it noticeably helped to cut out gluten and caffeine and then ive cut down on meat and dairy. I think gluten is a big one for being inflammatory but you can see what works for you. Im not saying its a fix but I’ve definitely noticed clear improvements. Have a look at @this_endlife on instagram, and others, who have great tips and information. Turmeric is also supposed to be anti inflammatory, perhaps you could look at supplements. I know lots of people turn their noses up at herbal things but having learned to listen to my body and having trialled quite a lot in the last couple of years I know now that some things genuinely work for me and some dont so I personally would say its definitely worth investigating what works for your body. Xx

Hi,

Thank you so much for your reply! Yes my GP has recommended more herbal remedies as painkillers and things like Naproxen havent helped me at all unfortunately. I ve been drinking loads of tumeric tea and have began to try and change my diet into a more vegetarian one. I ll also try to cut out gluten as well. I'm mostly struggling to cut out caffeine however as I constantly feel exhausted from the moment I wake up to the moment I fall asleep. Did you find that once you adjusted your diet you felt less tired?

Thank you so much for your advice x

Hidden
Hidden

It's so hard dealing with Endo when it's really taking over your life and I can empathise with you as well. I can also recommend getting a Endo book on lifestyle changes (I picked up one from Amazon) and I made changes to my lifestyle and diet. I now eat near enough a vegan diet apart from some eggs and cheese and I also follow a diet for IBS suffers and this has taken a few months to transfer to but has helped remarkably (try cutting out things one at a time and try for a while and see if it helps) The pain has reduced a lot and I can now function a lot more normally. I don't know why the doctors don't talk to you about trying different diets.

Good luck and hope you find something that helps

Hi,

Thank you so much for your reply! I ll have look on amazon for that. I’m slowly starting to change my diet at the moment so I’m hoping it helps! I’m glad you’re not in so much pain now, I know what it can be like and it’s awful!

Thank you for your advice and help it’s deeply appreciated x

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