Perhaps endometriosis? : Hello everyone I... - Endometriosis UK

Endometriosis UK

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Perhaps endometriosis?

Blossom223 profile image

Hello everyone I hope you’re all well! This is my first time using a forum like this but I’m really desperate for some advice and would really appreciate your time please :)

So I am 17 years old and for the past year I have struggled with an awful menstrual cycle. Firstly they are so irregular, so much so that my average cycle length is 72 days and my last period was 50 days ago (absolutely no chance that I am pregnant). Additionally, when I do eventually have a cycle, it is always super heavy, prolonged and painful. Usually it will last anywhere between 7 to 9 days and the pain is so debilitating. I’ve missed college and work every time I have my cycle because it’s just too heavy and too painful to move. I always feel faint when I am on and even sometimes I do actually faint.

I have spoken to my GP countless times and I just have the feeling they don’t believe my symptoms. They’ve issued blood test and ovarian ultrasound in the past in which they told me have come back normal. I’ve tried lots of medication and it’s just no use. I just honestly don’t want it anymore :( I’ve spoken to my mother about to and she’s not sure what to do either. I just wish my GP would take me seriously.

I am ever so sorry for this rant I’m just honestly quite fed up (I know it sounds selfish). Thank you so much for reading my essay lol 😅.

26 Replies

Its not selfish lovely, its horrible when your concerns are being dismissed! My doctor was the same, just told me loosing weight would help regulate my periods and make them less painful 🙄 she only started listening when I told her I had pain during sex, thats when she booked me for scans and a laparoscopy.

Blossom223 profile image
Blossom223 in reply to Endom27

Thank you so much for your reply! I really appreciate it. I was so worried that I’d come across as insensitive or like I’m trying to self diagnose myself and that’s the complete opposite of what I am trying to do. As awful as it may sound it just feels like they don’t really care. I’m so sorry to hear that your doctors dismissed your symptoms too in the beginning! Hopefully I might get some answers soon!! Thank you again and I wish you the best of luck for your future ☺️

Endom27 profile image
Endom27 in reply to Blossom223

Alot of doctors dont really care...your symptoms do sound like mine and I have now been diagnosed with Endometriosis but yours could possibly be PCOS too? I hope your doctor starts listening soon as its awful! No o e should be made to feel like they have no support especially when you are going to them for help 😞

Blossom223 profile image
Blossom223 in reply to Endom27

I honestly am so grateful that you’re taking the time out of your day to reply to me 😌 Maybe, it feels like a never ending battle but I’m sure I’ll get somewhere eventually. You know too but it’s just so frustrating 🙁 Thank you so much again and I hope you’re doing well 🙂.

Endom27 profile image
Endom27 in reply to Blossom223

My suggestion would be to say you have pain during intercourse? They might actually listen to you then, thats when they listened to me and took it further. Honestly I am happy to help. I know how hard it is to deal with something like this when you just want answers and support! Please keep me updated on your journey xx

Blossom223 profile image
Blossom223 in reply to Endom27

Yes I was thinking that! I don’t think I will be able to thank you enough, I am so grateful for your support, I will of course keep you updated if you’d like ☺️ that’s very kind and caring of you.

Also I have just read your post and although I don’t know what you’re going through I want you to know that you will get through this, don’t ever give up. You’re strong and everything will work out for you, I know it. X

Endom27 profile image
Endom27 in reply to Blossom223

Yes tell them the pain is near your cervix, thats where I get mine. Just keep pestering them and they will eventually listen. Its better to get it under control now so you can find ways to help your symptoms instead of dealing with them by yourself 😊 thank you thats very sweet of you! ❤

Blossom223 profile image
Blossom223 in reply to Endom27

Thank you so so sooo much for everything!! 😌 Awh you’re so welcome ❤️

Hi.

I'm so sorry to hear your going through this at such a young age.

I don't think doctors fully understand, it took 8 years for me to get diagnosed, and in the end I just went to my doctor and told them i wanted to be referred, and they did. But unfortunately by that time I was severe stage 4.

I would recommend you try that. I see you have had an ultrasound, but the trouble with that is endo does not get picked up by ultrasound, ideally you need to push for an MRI.

Good luck. Keep is informed of how your journey goes.

Hi! Thank you so much for your reply 😊 oh wow 8 years, that must’ve been so awful I’m so sorry to hear that. I will do!! Thank you so much for your advice I really appreciate it, and I will of course. I hope you’re well and I wish you good health for your future 😌x

It's not selfish, I pray your mom takes you to a different hospital. Don't loose hope, don't let it frustrate you even though it is.

Blossom223 profile image
Blossom223 in reply to Blueeve

Thank you so much!! I won’t, I really appreciate you’re advice ☺️

You poor gal!

Lots of love & prayers xx

Keep a written diary of your cycle & symptoms (pain type - sharp, throbbing, localised or widespread etc, general discomforts, menstrual heaviness... ) as evidence, try & switch to a different GP ASAP.

You're still young & hopefully you'll get diagnosed sooner rather than later. A lot of us here have 15 years+ on your age & wish we'd been listened to when we were younger. You have that chance & this is a fight you have to psyche yourself up to have - is your mum willing to support you too?

I would recommend asking to be referred to an endometriosis specialist, rather than just a regular gynaecologist - endo won't show up on a regular scan, it can possibly show on an mri, but laparoscopy is the definitive tool for diagnosing. Here's a link to find your nearest specialist, bsge.org.uk/centre/

This forum is great if you have questions & just need some general, moral support - we're in this rocky boat together, we believe you & we care xx

Aww thank you, that’s really kind of you to say that. Yes I was thinking about switching GP because I just feel like they aren’t listening to me 🙁

Thank you!! You’re so kind I really am so grateful 😌. I’d hope so, my mum isn’t really sure what to do and gets a bit awkward when I talk about it but I will keep trying.

Amazing thanks you for that link!! I am so grateful. Aww that means everything to me, I won’t ever be able to say thank you enough for your support xx

I went 8 years with no one taking me serious! In the end I went to a new gp with all my symptoms and said I think it's endo. Please will you refer me and he said that he had to do the same

Tests again but then he would refer and he did, he was the first person in 8 years that actually listened! It doesn't show on scans normally, mine was only found when they did a laparoscopy and saw inside me and I had stage 2! Just keep going until someone actually listens to you, it's worth it when they do!

Oh no 8 years bless you that’s awful!! That must’ve been such a relief when you actually felt like you were being listened too!

I will thank you so much, I am really grateful for your kind words 😌x

Hey lovely, I’m a lot older than you but I had a very similar situation with my gp and consultant. I had to fight to get to see a gynae consultant. She then told me I didn’t have Endo because my scan came back clear...I knew something wasn’t right so kept on fighting and I’ve just been diagnosed a few weeks ago with deep Endo via laparoscopy by the same consultant.

Don’t ever let doctors dismiss you. Nobody knows your body better than you do and if you feel something is wrong then most of the time we are right.

I had my gallbladder removed 4 years ago due to unexplained pain and they found a gallstone so decided to remove it even though several gps and a consultant told me they were adamant it wasn’t caused by the gallstone. I’ve only now just been diagnosed with Endo which I genuinely think caused it all along as the pain never went away.

Keep fighting and it’s always good to have somebody on side, a family member to come in to appointments and support you. My mum has been amazing and came to everything with me after I was dismissed the first time. Good luck and I hope you get the answers you need x

Oh no I am so sorry to hear that ☹️ Yeh my GP say the same that because my ultrasound came back clear I don’t have endo. Well done that you kept fighting!!

Thank you so much, I feel like this isn’t right at all; I just don’t believe that I should be so debilitated by my cycle!!

Aw bless you, I bet you were so relieved when you found out the true cause!! I will of course! Thank you ever so much, you’re too kind!! ☺️x

Yeah I had the exact same, to be honest it seems as women we are quite often dismissed as they don’t know enough about Endo! Keep on and don’t let them tell you that because your scan is clear it can’t be that as it won’t always show on all things, a laparoscopy is the only definite way to rule it out. To be honest I was so relieved as i knew something was wrong but felt like I was going crazy!

Just to know that you’re right and trust your gut, I almost had to beg for a laparoscopy, if I hadn’t I’d be in the exact same posituon as before with no answers to this horrible pain!

I really wish you the best of luck 🤞🏻 Let me know how you get on x

I’m so sorry you’re being treated that way. Sadly it’s how most GPs act towards chronic conditions. They just don’t have the knowledge and experience which is sad. I asked my gp about Endo 6 years ago and she laughed in my face and said what would make you think that? It turns out I have stage 4 Endo and almost ended up with a colostomy bag (poop bag). I was 30 at the time, sadly because your young you’re going to get less help. This gp also missed a concussion for a year which has now led to 17 chronic illnesses. Don’t be like me and end up with a ton more conditions because you’re body is over worked.

No scan is definitive for Endo. If you have a Endo specialist they can tell from transvaginal ultra sound where your issues are but a standard tech won’t be able to tell. MRIs can sometimes tell if they can physically see your bladder or ovaries are on a different place. The only way to know for sure is surgery (lap).

You need to go into your gp with your mom and demand to be referred to a gynecologist. On this forum there are some websites (I’m in Canada so I can’t help) that list which gyn are Endo specialists. Don’t let a regular gyn touch you because they can end up doing more damage if they remove it the wrong way (excision vs ablation) or they tend to leave a lot of adhesions behind.

If you leave Endo to party on for years you’re going to end up with central sensitization where all pressure is felt as pain not pleasure. Then if left it can turn into fibromyalgia (I have it, it’s the most debilitating on a daily basis). You need to find a type of contraceptive that works for you. There are so many types now a days. Endo feeds on estrogen, so the longer you let your hormones roam free the more damage it can do. You can only have so many laps to remove adhesions before you end up with too much scar tissue. Try and preserve your fertility early (I wish I had, I can no longer conceive). You can do depo shot, iud, back to back birth control.

Eliminate dairy, gluten/wheat and sugar from your diet. These are the main foods that cause inflammation throughout the body. It’s not a quick and easy fix, it will take 6 months minimum. Try and remove as much preprocessed food and eat as organic as you can.

There are specialized physio therapists who are trained in pelvic pain and Endo. They can give you daily exercises to help strengthen different muscles, help with incontinence, bladder pain, etc.

One other thing to look into is if you have adenomyosis. Endometriosis causes pain, adenomyosis causes heavy bleeding. I have both (and fibroids). Adenomyosis is endos evil twin sister. It grows adhesions in the muscle lining of the uterus and the only way to remove it or fix it is a hysterectomy. A hysterectomy is not a cure for endometriosis. As long as your body produces estrogen the Endo can still grow.

I know this is a lot of info but there is a ton you can do to help yourself. There isn’t a magic pill for this disease. It’s a battle and a struggle so you have to try and do what you can to help (birth control pills/ diet). Keep on top of this disease so you don’t end up with further issues and complications. The diet is so important for this reason. You’re so young and have a lot of opportunity! Sending lots of love your way. You’re doing a wonderful job. 💕💕😘

Hello! Thank you so much your you’re reply I really appreciate it, I am so sorry to hear that you had such a horrible experience with your gp; that’s awful. Oh no, I hope you’re doing better now?

I will go back to my doctor and demand to be referred thank you, this has been going on too long and I just can’t take it anymore. I will have a look! Unfortunately I can’t go on certain types of contraception as breast cancer runs in my family and my risk is too high 🙁 I really am grateful for your advice! Bless you, you’ve been through a lot!!

I will definitely cut out diary, gluten, sugar and processed foods thank you for the tip! Thank you so much for your extremely knowledgeable reply.

No no please don’t worry, I am so happy that you’ve written back to me! I really appreciate all your advice you’ve given me as it is the push that I needed to go back to my doctor. Lots of love to you too, thank you 💜. I wish you all the best and good health for your future ☺️ Thank you again 🥰

You’re very sweet. Thank you. I am doing okay, it took my poor body about 5 months to recover from my Endo surgery. Some days are really tough but I find strength through my art. I can no longer work but I’ve started my own business of different artsy things I create.

I have found the best help through private health doctors. That is something that you can also do if you don’t get anywhere with your gp. Try searching this forum because I’ve seen it posted several times that if you find a private Endo specialist they can do the initial exam and refer you back to your govt supplied medical for the actual surgery but with a Endo surgeon. I think I’ve seen them mention it’s about $250 for the visit. If I can offer advice, it will be the best money spent. My private doctors never make me feel like it’s in my head. They think outside the box to fix things.

The only person who can tell you that something is wrong with your body is you. Be firm and don’t waver. Know that what you’re going through is not okay but you will get through this.

I would highly recommend asking your gynecologist about different types of birth controls as I am only aware of the pill being an issue for breast cancer. There are other options like the depo shot, iud, vissane, etc. Without these things your Endo will grow and grow and grow. This will impact your fertility. Your specialist will be able to guide you to a safe option. I don’t want to scare you but this is a condition with serious outcomes if not properly managed. The disease can impact every organ in your body as it can cause your insides to form a webbing between your organs. The blessing is that you’re 17. I wish I had the strength to stand up to my doctor at that age. I ended up in emergency several times with period pain and all they would do is run a pregnancy test 🤦🏻‍♀️.

Anytime you have a question or anything at all you can feel free to send me a message. I am glad that this forum could help to guide you and give you an extra push to talk to your doctor. Sending you lots of hugs. 💕

Ok firstly try to see a female dr, secondly if you are bleeding very heavily and prolonged , it can lead to iron deficiency , this can be a danger in itself , and can be picked up by a blood test .

Go into detail with your dr about blood loss , and how many pads you use , and changes etc.

Explain you feel tired , exhausted , lay it on .

You want them to test your iron levels , as this can then show there’s a problem , that needs further investigation.

Good luck

Ally

Blossom223 profile image
Blossom223 in reply to Allison45

Hello Ally, thank you so much for your reply! I’ve not had a blood test in a while so I will definitely request another!

Amazing thank you so much for your advice, I will mention this and hope they actually listen to me!! I am so grateful that you’ve posted this. All the best for you and thanks again! 😊x

Hello, it doesn’t sound good atall. You must be persistent as I was, unfortunately it took me around 5 years or more of endless gp and hospital appointments from the bloating and pain I got with mine , until finally they booked me in for a diagnostic laparoscopy after they tried saying I had ibs, well as I knew I didn’t have ibs I kept pushing and in all the time I spent pushing them to do something my endometriosis had progressed to stage 4. So then I had to have more surgery to have it all removed and I know it will be back again soon. But you have to find ways that you know won’t aggrevate it and tell the gp you want a diagnostic laparoscopy if anything to rule out anything like endo.

Best wishes

xx

Hello, I am sorry you are going through this but you have to fight on it took me two years an once they diagnosed me I was chalk to one side but I still fight it every day. Keep fight for the answers you need never give up it push and push till they have to give in xx

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