13 with Endo

[Whataweek01]

Hi all, my 13 year old daughter was diagnosed with Endometriosis of her pelvis in March this year after 3 horrendous years of constant pain since starting her periods. She then had covid really bad 10 days following surgery. She was so desperate to get back to school after missing so much and her mental state is so low. She feels that she is different to every other 13 year old and really hating herself. We have tried some counselling and all kinds of different medication. She is on her 3rd type of contraceptive pill but each one makes her so tearful. She is desperate to meet/speak to someone her own age who can relate to how she feels. I’m sure a large majority of people on here at symptoms at the same age and I feel a diagnosis, although gave confirmation the pain had a true cause, she is struggling to come to terms with it and wakes in pain still every single day. I’m so desperate for her to get some normality back again. Any advice appreciated Thankyou

[Linley]

Hi

I am so sorry your daughter has had to go through this at such an early age. I presume she was seen by a paediatric Gynaecologist? Did they not give you any advice or support group info?

If not suggest your best course of action would be to contact Endometriosis UK they have the expertise to help you. I alas am no help to you now as even though I was taken to see a Gynecologist at the age of 15 it was a totally different experience to what it is now, there were no support groups, no Endo UK, no awareness of Endo and no bedside manner from the Gyna, my mum bless her was not impressed. Big hug to you daughter🤗

[Whataweek01 in reply to Linley]

Hello Thank you for your reply. We had a brilliant paediatric surgeon at the John Radcliffe in Oxford, however it was literally the day before the government stopped all operations. We were practically rushed out of hospital due to covid pressures and didn’t get the chance to ask much afterwards. We were just so relieved that they found something as we went to so many doctors who tried to say it was all in my daughters head and blames it on anxiety. We believed all along it was Endo but had to go private in London for someone to listen. One consultant even said get a dog as that will help with anxiety!! She has massive fear now of hospitals because of how we have been treated in A & E every time we have gone in with her pain. They misdiagnosed her initially and said she was constipated! Gave her every bowel treatment you can think of and then she ended up in hospital because she couldn’t walk as they sent her bowel into over drive. It breaks my heart seeing her so sad every day. She was so desperate to have the diagnosis to prove everyone she was genuinely in pain, but now struggling with the diagnosis. I’ve looked at the support groups on Endometriosis.uk but they say they are all on hold just now. I’m going to call the secretary of the consultant today as she isn’t due back until October but I fear it has come back already. Thanks for your reply

[Moon_maiden]

There are local groups of endometriosis UK on Facebook. The contact info is on their main website. Hope your daughter gets help very soon. I’m sure she appreciates how supportive you are, take care.

[Whataweek01 in reply to Moon_maiden]

Ah ok thank you, I looked for the support groups on the main website and it said there are no groups running just now. I will check on fb. Thankyou

[Moon_maiden in reply to Whataweek01]

My local group has been running meetings online, they’ve been really good. They run as private groups on Facebook.

I’m sure if you email, they’ll respond.

[Whataweek01 in reply to Moon_maiden]

Thanks I’ve emailed this morning so fingers crossed can find one

[Jane781]

I’m so sorry, what a worry for you. I wasn’t diagnosed until late (36!) but I think I had it for years. I’m happy to help you and talk to you about whatever you need.

Some people swear by this Endo diet, I've also heard of people taking meat products out of their diets because of the hormones, but I really don’t know what the best advice would be for a young person. I sound like a stuck record but the period pain patches from Amazon are my life saver!

Let me know if I can help xx

[Whataweek01 in reply to Jane781]

Thank you so much. What are the patches called? I will look into them Thankyou. My daughter is just so desperate for someone who has gone through it to give her some reassurance. Right now she feels there is no future and she’s so fed up of taking pain relief. She doesn’t sleep every night. I’ve got her on zinc supplements now and cut back on red meat as someone advised us to. I’ve bought her the yoga ball. I was recommended cherry juice for Holland and Barrett. She has a TENS machine. I have even inquired about acupuncture but no one has got back to me yet. The timing is awful due to covid it’s added so much more pressure as she just wanted to get some normality back after her surgery. She’s at the point she won’t message her friends as she feels she’s burdening them. It’s breaking my heart. She was under the child and adolescent mental health team for 10 months to help with her confidence and anxiety as she was so bloated all the time she was trying to not eat, she was scratching herself with the pain. It’s just so sad as there’s this massive gap in support available for teenagers that I can see. I’m very sure there are others in a similar position to my daughter but she feels so alone with it 😢.

[Jane781 in reply to Whataweek01]

That’s heartbreaking, bless her. Sounds like you’re doing all the right things. My Gyno told me to take vitamin B6, cactus Angus and evening primrose oil - again I don’t know if younger people can take them. I’m happy to chat to your Daughter if it helps. Life is not over, it’s just about managing the symptoms the right way. Pm if you want to chat or need more help. Hope you’re ok xx

[millieo12]

I definitely relate to this. I got diagnosed pretty early and I have been in pain since I was 12. I have had 2 laps and I’m still in pain, which I think is because I had a dodgy surgeon 😬. I am still in high school and I t’s so hard to miss school, and feel different to everyone else when you just want to be a normal teenager. I have had a horrible reaction to 4 different OCPs, however, right now I have the mirena IUD and provera (progesterone only pill), which hadn’t caused me to have any serious reactions. Honestly I feel like the best thing to do is to find a brilliant doctor who can write letters to the school, do check ups, etc. It’s really hard though. I’m still trying to find a good surgeon who can listen to me. When I am in horrible pain I try to have as many heat packs as I can or get into a hot shower (only for a short period of time because I don’t want to be sick). A good support system is the best way to get through the pain, but it can be really hard to find one. All the best xx

[Whataweek01 in reply to millieo12]

Hello thank you for your reply. Sorry to hear you are going through this so early also. We keep saying my daughter is so lucky that they finally decided to do the laparoscopy but we think she has Endo in her bowel and they didn’t go that far due to the risk involved! My daughter has stopped messaging her friends as feels she is a burden and they don’t understand. She just keeps saying she wishes she could speak to someone of similar age who is going through this too. It’s so hard. You sound like you have had a terrible time also. Fingers crossed for you things continue to improve and you find a good surgeon x

[millieo12 in reply to Whataweek01]

She could definitely message me and talk about her experiences, if she wanted. That’s a shame that you don’t know if they removed her bowel endo. I’ve also had bowel endo. It’s so hard because sometimes you have no idea about what the surgeon did, or what they didn’t do, and there is no way to certify that they are a ´good’ surgeon. I hope thing get better for her too! xx

[GoldenGirl2002]

Hi,

I am 17 and have suffered with Endo since your daughters age. It has a massive impact on mental health, especially in the time of the pandemic and as a teenager it is easy to feel isolated and like nobody understands. If she wants to get in touch I would be happy to talk to her if she’s feeling low, tell her to stay strong and that it will be okay xx

[Whataweek01 in reply to GoldenGirl2002]

Hello, thank you. Sorry to hear that you have also struggled. There is so little awareness about Endo in teenagers and it’s amazing the amount of adults who I know have never even heard of it. I’m new to this group. I think she probably would appreciate messaging you Thankyou x

[GoldenGirl2002]

Thank you! I find the lack of awareness about the condition makes it so difficult to talk about and the support for people our age is not easy to access. If she does decide to have a chat, just use the message feature on the forum and I’ll do my best to help! I hope she’s okay x

[Whataweek01]

Fab Thank you. I’m sure she will message you. That would be good

[Kenza786]

Hi I am 36 it took them years to diagnose me since childhood was always in agony but no one really bothered to get to the bottom of it. So am glad your daughter has a early diagnosis even thought it is not very nice. I was recommend be you monthly patches and honestly they are really good takes about 15-30 minutes to kick in and they are all natural ingredients. Using the patches means I take less morphine and tramadol. You can go on to the be you website and get a subscription and the automatically post them to you. Also warm milk not boiled with a teaspoon of turmeric daily does also help again it’s natural not medication help with the inflammation.

[Cakes34]

Oh my goodness I am so very sorry to read this and send well wishes to your daughter. I had a similar thing when I was a teenager I was in hospital at the age of 13 with pelvis pains and they told me I would have problems with my periods I was a late starter and I felt like they just brushed everything to one side and now I’m starting to wonder if that was the start of my Endometriosis back then.

I am praying your daughter will be alright, and that you manage to get sorted and some answers.

[Rjb_88]

Sorry your daughter is going through this. I know how she feels as it started for me at 14/15 and I was put on the pill - it’s horrible to feel like you’re the odd one out and worried about your period starting again. The good thing is that she had been diagnosed so soon, I wasn’t until I was 25 so hopefully she will be able to manage it.

There must be a support group out there for young adults with endo, maybe try endometriosis uk? Hope she is ok and things start to get easier for her x