Hi, I haven’t yet been diagnosed with anything - endometriosis etc… but I joined this forum to see if it’s worth pushing for it to be investigated? I’m only 18 but I have had several trouble with my period since I was 9, to the point where I am curled up on the floor in agony, or where I’m shaking badly from the pain, and sometimes painkillers don’t touch it. I have been to the doctors many times about it, and I have been prescribed a mini pill, which didn’t work and made me bleed for over a month, and tranexamic acid, which I still take, but it doesn’t seem to do much anymore. I have never had any suggestions if endometriosis from the doctors or any suggestions that it could be, but I’m tired of being in severe and debilitating pain every month, and I’m worried about not being able to have kids.
I am a little afraid of the doctors having to examine me, or getting an ultra sound, so I have been holding off, but I’m concerned that if it could be endo, that I could struggle with fertility - I really want kids and I don’t want to sacrifice that because I didn’t see a doctor in time.
I tend to have severe pain that affects my bowel, and is like a sharp stabbing pain in both sides at the front of my lower abdomen, as if it is my ovaries that are hurting, and back pain that makes it hard to stand, with even my legs being in pain. I get really heavy periods, and they can make me shaky and quite poorly. Also, I don’t know if anyone else experiences this, but I tend to stop bleeding after a few days, and the symptoms get better, then start again, quite heavily sometimes? As if I get two periods?
Hope someone can help with telling me their experience - thank you for reading this 😊
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OakP134
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hi hun how's u doing today? I'm sorry to hear that ur suffering 🙁 unfortunately I feel ur pain 😔 I've been suffering with my periods since 13 and diagnosed with endometriosis since 05, I can't work anymore and I can't walk, stand or drive for long periods of time. I have been given every combination of hormonal treatments and pain relief medications u can imagine (with little success 🙁) however I do have 3 beautiful children after being told that I'd never be able to have children 🤷 all conceived and delivered naturally 🙂 so please don't feel like a diagnosis of endometriosis automatically cuts off your chances of being a parent 😊 Dr's reg get it wrong.ur symptoms do sound typical of endometriosis, I have a long list of my symptoms on my profile and I have all of the one's that u have mentioned. I would say it's worth getting the Dr's look into it at least then you can work around it and get any help u need eg I can't work anymore but I have been awarded pip for endometriosis.
I hope you do get an explanation for your pain and the help you need, if you ever want to chat or just rant please pm me 🙂 look after yourself xxx
Thank you ☺️ That’s very reassuring, I can’t wait to have kids when I’m older, but it has just been playing on my mind. I’m going to go to the doctors this week then, how did you get diagnosed? Did you have to get an ultra sound or was it done laparoscopically? (If you don’t mind me asking, of course.) Thank you for replying, it really does help 😁 xx
no worries hun 😊, I'm really glad I could reassure you about having children 😊 i was diagnosed via laparoscopic surgery, although ultrasound did show I had ovarian cysts too, I've had so many operations u can play dot to dot with my scars 😂 xxx
Hey there, i have only recently been diagnosed via laparoscopy but i also had cysts that were visable on the ultrasound.What i would say is I'm 38 and i cantrace back most of my symptoms to when my periods began at 11! Dont wait to speak to your doctor, make a list and go/be prepared to discuss everything so that you a) dont foeget anything you feel is important to cover but also b) cant be disuaded that your symptoms are not significant! For me, i hadnt even heard of endo until i found it and asked my doctor. So going armed with your information can only help.
I was lucky? for many years to be on a pill that stopped my periods and masked many of the core symptoms but due to Migraines had to come off that and thats when everything camw back with a bang. Getting all the correct treatment now though. 3 weeks post surgery. 🙂
I'm really sorry to hear you've been so poorly. How are you today? How was the weekend? I hope you've managed to get some rest.
I was misdiagnosed with endometriosis and was robbed my prime - teens and 20s - because doctors can be utterly useless. The intensity of the pains and their effect on life and work is something I can fully relate to. I went on this forum for the same reason as you and there's a few things I've learned.
1) Reach out to Endometriosis UK and get a list of approved consultants. Some are private, some are on the NHS. If the queue to the NHS is too long, you could take a shortcut by reaching out to a private who also practices with the NHS, pay for a session or two in private and ask to be put on their NHS waiting list. I know a very good specialist here in London, if that is an option. Learn about NICE guidelines. Nancy Nook for surgery.
2) Get yourself checked for nutrients and thyroid. Heavy bleeding goes hand-in-hand with iron deficiencies, or even anaemia, and it's worth checking that out! You should also get your folate, B12, vitamin D and thyroid checked. I found out I was anaemic and had Hashimoto's disease (not endometriosis), but endo was confused because of the symptoms. Note that not everyone with these issues will have endo symptoms and some with endo will have this too. You can get these done with your GP or in private (e.g. order tests by private providers). Thyroid UK and the Thyroid forum has more info on this. Like Endo UK, Thyroid UK is able to provide a list of practitioners in private and NHS. Stick to your guns and push for your tests. Don't take a no for an answer!
3) How is your diet? I found that some foods trigger but excluding too much might not be very good for your nutrient intake. This forum has wealthy literature on endo-friendly diets and I found Endo Resolved's guide to be pretty useful before I was ready to jump into a fully-fledged anti-inflammatory diet (which interestingly also helped my thyroid). Cut out things like lactose, gluten and all the junk. Since you say you have bowel issues, you might also want to reach out to a bowel specialist with whom you might get to have a colonoscopy to check if your bowels are doing ok. This can be done with the NHS, but there are forums on bowel issues here too... Again, you can decide between private and NHS. I've been to both and was happier with the private since the NHS consultant gave me the wrong diagnosis and refused to refer me to Endocrinology, adding a few hellish years for me. Bowel issues CAN be resolved!
4) These are little bits and bobs I found use through this forum.
-Yoga helps with staying calm and keeping flexible/exercising when too unwell to go out for a run.
-A vegetable-rich diet helped me a lot with the digestive issues, but make sure to take iron supplements (not those multivits, but a good OTC one like ferrous gluconate or liquid one like Floradix).
-Take your supplements religiously and make sure to space them out throughout the day so they won't clash against each other.
-TENS machines are great and you can find one for under 30 quid on Boots or Amazon, worth the money!
-Combine magnesium with pain relief (a combo of paracetamol and NSAID) since magnesium helps the agents act quicker, paracetamol hits first and then comes the NSAID to deal with the inflammation. You can use magnesium gels if you don't like taking tablets, there's one I love from Holland and Barretts, Magnesium Gel by Better You.
-Keep a diary of your symptoms, what you eat, what supplements you take. If GPs are being misogynists, then you have a record to show them - and can lodge a complaint and request a different one (know your rights).
5) Coping mechanisms for when flares come. During your good days, cook extra batches and freeze them in for when you're too unwell to cook (and that way you dodge the takeaways). Do online food and retail shopping, it'll save on some of the time and energy, which you could use for something else - like studies, work or your hobbies. Keep a hobby or pursue something that you like, juggling with a chronic illness is difficult and sometimes you need to think about something else. There's an online community for just about everything and you could make some new friends that way, great if you're too unwell to go out irl Have a little "medical bag" containing painkillers, supplements, pads or tampons with you at all times in case emergency strikes - I had these in EVERY bag I used for work, leisure, just in case I'd forget... I also switched to a Moon Cup which saved me some money and helped me measure how much I'd bleed every month, with or without birth control. Requires some organising but a cute planner and colourful stationery really help
6) An endo specialist, esp a private one, might be able to order in dienogest if the regular mini pills aren't helping. They're pricier but they help. I've heard that Visanne should be available some time soon in Britain but under the name of Zalkya, unless in circulation already. Otherwise you get it as a combined pill, Qlaria (using a new generation oestrogen). There should be more about this in the Endo forum and remember - most people who respond well don't post online.
I've been on Visanne since 2018 and have been very happy, some side effects but worth it. Once my thyroid and irons are sorted, my endo and gyno are thinking of moving me over to Cerazette. We'll see what happens...
7) It's a good time for introspection. If people treat you like shit when you're unwell, then you might want to dump them. This applies for family too! I've overhauled my personal relations after having symptoms gaslighted even by my parents, and I've been much happier since I've cut these people out. My friends are my family now. Same applies to employers. Thankfully, it's easier to do remote work now during the pandemic, but also remember that you have the Equal Opps Act working in your favour since you can use it to work from home (in terms of making adjustments in your job, which could be slotted into your contract).
8) Misogyny is still a reality in the ripe year of 2021. Don't let any man or woman (!!!) discourage you in your endeavours to get better. IT IS POSSIBLE! (Imho, men have been the best endos over women)
Finally, many women here have been able to conceive naturally and/or with IVF. I haven't tried this out yet, but maybe that day will come idk pretty happy as is
Also, try to get your blood works done BEFORE you take up supplements, which could be introduced gradually over time in case any symptoms arise (then you'll know what's causing what). It's good to have a baseline of your levels before you start treatments and investigations, nice to compare during the process and to give your GPs and doctors a hard time where relevant
Thank you for all of the advice!! I’ll take it all on, and I’ll definitely work towards getting better. My symptoms have settled down today so I’m doing much better, thank you 🙏
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Have a little "medical bag" containing painkillers, supplements, pads or tampons with you at all times in case emergency strikes - I had these in EVERY bag I used for work, leisure, just in case I'd forget... I also switched to a Moon Cup which saved me some money and helped me measure how much I'd bleed every month, with or without birth control. Requires some organising but a cute planner and colourful stationery really help 
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