I get worried about certain conditions that i havent been diagnosed with yet such as endometriosis because of how my cycle always seems to be like😭😭😭I struggle really hard with my cycle and it gets really exhausting and freaks me out a lot. When im on my cycle, i try to stay awake all night as i have anxiety about going to sleep knowing that i can leak at any time (tmi sorry) and im so worried it might be endo😭😭at the start of 2023, i had a pelvic scan to see if there was anything there that shouldn’t be there and it was clear that there was nothing there. Im so worried about this. I just hardly talk about Endometriosis or any other things but please help me out x
Thank you all 🥺🥺
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Beauty20_
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Hi, Beauty 20. One of the keys to keeping your anxieties under control is making sure you talk to someone about how you feel. Another essential aspect is to find out as many facts as you can about whatever it is that is worrying you - it can help you to feel more in control and get things in perspective. Then you will feel better able to tackle the issue and move on.
When you post anonymously on here, there’s no need to worry too much about TMI/medical/emotional/personal details… sometimes these things need to be out in the open. In my opinion, a major reason why people don’t get the help they need is because of certain things being seen as taboo or too embarrassing to mention. This is a safe space.
Have you compared your monthly symptoms to those listed as commonly found in endometriosis? Have you mentioned every symptom to your doctor and explained how they affect your life and trigger your anxiety?
It is worth noting that sometimes endo is not seen on scans (sometimes because the staff performing/interpreting the scan do not have extra training in endometriosis). So one clear scan does not mean that you definitely don’t have it.
You deserve to have any pain, excessive bleeding or other unpleasant symptoms acknowledged, investigated and treated. You may find that you have to be quite firm with your healthcare providers to get help, which I know can be difficult when your mental health is not at its best!
I have found this forum excellent for information, support, advice and real, detailed experiences. Hopefully by reading through other people’s posts & comments you will feel comforted that you are not alone and will feel empowered to get the care you need. x
Awh honestly this is the most helpful advice ive ever received ever in my life so i am very much appreciated x
My symptoms (nausea, fatigue, frustration, mood swings and more) have been going on since the first period of 2023 and they were new symptoms in January and then been going on all year whenever i had my period. But ive had the very painful tummy cramps and very painful lower back cramps and very heavy bleeding since i was 12 and have been going on up until this day 😭😭😭😭 now ive seen the symptoms for endo and am worried that it is the case. Earlier this year i went to my doctor for my yearly check up and mentioned it to him when i went about my period and how heavy they are and so painful they are and he had booked a scan of my pelvis which was clear but as you said, cannot always show endometriosis. He then prescribed me some meds that reduce my flow and it worked quite a bit but i dont have it prescribed to me anymore.
Not about my period or anything but i just wanted to say that i never had travel anxiety problems or travel sickness problems until i was 15 years old when i was on a school trip to wales (3 1/2 hour journey) i was very anxious about the trip itself and the journey and it got to a point where i panicked and almost thrown up on the coach which is always one of my fears (vomit/people vomiting around me/if i vomit/if i feel like im going to vomit, i shake, i panic, i would be in shock) and now whenever i go on a long journey i would panic about it because i have a bit of a panic about vomiting during the journey and the journey itself and cannot go without my headphones as i use music to feel calmer. But this year on boxing day, we had a 1 hour journey to cannock for the boxing day sales and i had my headphones in and everything and still felt so nauseous and panicked me a lot. My stomach was churning so much and i tried so hard to focus on the songs i was listening to. I gladly didnt throw up at the time but it still could happen at anytime of a very long journey. Just wish me luck for when i go on another 1 hour journey to Manchester next Wednesday with my parents and siblings. I also have autism and so its hard for me to speak up about my feelings and if i feel sick or dizzy or anything like that i wouldnt say anything (and yes im almost 20) and like its really hard to open up to anyone that is my family because ik theyre ones to judge and not believe what i say. One other time i was just in my city and i was going into town which isnt even that long and was going on the bus, and i almost threw up on the bus then too which was certainly very strange. But that was the only time i almost threw up on the bus.
Bless you, that’s a lot to deal with! But I am full of admiration for you, because despite having these anxieties, you are still travelling and using clever ways to cope (like distracting yourself with music 😀).
You have also been brave enough to tell your doctor what symptoms you have been putting up with on your period. I hope you feel strong enough to follow up on this by going back to the doctor. If the previous medicine helped you can ask to go back on it and stay on it, or if it was not quite right for you, then they can find something else to try.
As you will also discover by reading other posts on here, every person reacts differently to each medication and it can take quite a while to find the right one (or the right combination).
You may or may not have endometriosis - but it is important to remember that even if that does turn out to be your diagnosis, it doesn’t necessarily mean that you will have problems getting pregnant.
And whatever is the actual cause of your symptoms, you still deserve to know what it is and to be given every opportunity to feel better ❤️🩹
You’re doing brilliantly and I believe that you are strong enough to do whatever you need to do. We’re here to support you too. Ask whatever you want, or just complain and we’ll listen! 😂
Hi 🥰 don’t feel bad about TMI on here, it’s good to have a safe space to open up where many people feel similar!
I’ve had multiple scans and tests, always clear but recently had surgery which did in fact confirm endometriosis - so please don’t lose hope if you’ve had a clear scan, like purple_badgers has said ❤️
High levels of pain on a regular basis is not normal and you shouldn’t have to settle with that, I would keep pushing to be seen. Keep a diary with symptoms and pain levels, as well as what you were doing/eating if anything that could have “triggered” as this will help evidence what you are experiencing.
Don’t worry about leaks in your sleep, I had this for years and still occasionally do - I just wear pyjamas I’m not overly fussy about, an extra long pad and if your really worried, put a towel down on the bed just in case ❤️ one less thing to worry about x
Whenever i have my period i usually put down 2 pads to keep it from leaking because my periods are so heavy and really frustrating and feel like punching it in the face even tho we can’t see it😭😭😭. Literally i use up so many pads that i use like 2 or 3 packs of them each month and always desperately need more especially when im on it and still need loads more😭😭😭😭gets me way too anxious and stuff like that😭😭😭🥺🥺🥺wish i never had my period tbf x i dont even have a boyfriend and am not even married and im already scared about having a married life and scared about having to go through pregnancy in my life soon as well as i really want biological children as well as fostering children. I really havent a clue how i could stop thinking about it when i physically can’t switch it off.
Thanks lovely x i really appreciate your response once again xx
Aw that does sound awful, I was quite lucky that my pill seemed to stop my periods (although totally masked my endo for years 🥺) I hope you find something that works, what about incontinence pads or pants as well as a pad in those?
I know it’s hard to see normality through all of this but please don’t be discouraged ❤️
I think you can get them online or via the chemist ☺️ a chemist may be best as they can always help advise on which ones to get! They’ll see loads of people with similar issues as well, so I’m sure they’ll keep you right ❤️
It is a struggle with that unfortunately! I am a regular with paracetamol and ibuprofen but i try to avoid it as much as possible - I use microwave heat pads, I have a small heated blanket on my chair at work which does seem to help with cramps and back pain, I just have it draped on the back of my chair so I sit against it ☺️ my partner found it on Amazon, it’s been really great! Also I find peppermint tea helps settle mines but it doesn’t always work for everyone xx
Awh bless x its okay honestly xx everything to do with our periods are a challenge xx 😭 i just take either two paracetamols, two ibuprofens or one paracetamol and one ibuprofen at a time😭😭😭and then i have my hot water bottle and i used to buy heat pads but i havent bought them for a few years now because like i just dont use them anymore but going out in public is always a struggle for me when im on my period x i also have problems going into crowded areas and stuff like that but like i have to go there a lot and it just overwhelms me a lot and that would clash with my period cramps as well as i get them rlly bad
hello! It can be stressful and worrying as I’ve been there too recently and not knowing exactly what is up with your body.
I have strong period pains and always have and because endo is not something that can be diagnosed 100 percent doctors need do 1 plus 1 and diagnose you.
It’s worth them doing a blood test to see if any inflammation mark and doing that before your period and checking harmone levels. They did that with me and I had the inflammatory mark high and it said that it may be endromitiosis. I would suggest to push doctors and GPs to keep doing tests so they are able to have a better idea of your medical condition. Hope this helps !
Thank you so much for your response xx i really appreciate your support xx i will make an appointment with my doctor and will write down my symptoms and what tests i need to do to see if it’s endometriosis or not x
good luck ! Also it’s comforting to know about this forum and that there’s other people suffering with us in a way and there’s many treatments available so important thing is to manage symptoms asap
I would always say, listen to your body. If you feel something isn't right, keep on nagging your doctor.I've had endo since I was 18 and from experience nine times out of ten, endo is only found during a lapaoscopy. Scans and internal checks rarely show.
I would also recommend you start a pain diary. Log everything that you feel is important to you. And take it to your doctor as evidence.
Thank you so much! Xx yeah i really understand what you mean! Xx i will nag my doctor xx thank you so much x i hope i get a lapaoscopy and see if i have it or not x
Endometriosis is sooo hard to be taken seriously about and I am so sorry. I haven't completely taken control of what I go through, but I put castor oil packs for an hour a day every evening before bed on the lower half of my tummy. Look into castor oil packs for endometriosis. I'm not giving medical information but it definitely provided major pain relief when the cramps had me at a 12.
I truly hope you find relief!! Talk with your OB/GYN about your concerns and document what you're going through!! This may also be very helpful, a book called "the 4-week endometriosis diet plan" by Katie Edmonds. It's a holistic guidebook to treatment! At least until you receive help from your OB/Gyn
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