Hi I’m Sara and I’ve just turned 22, this month, and over the last 3 years I have symptoms (similar to the ones listed for endometriosis) and they have become more severe or more frequent/longer episodes that have been stopping me from working or functioning properly (exercise, sex, going out); it has been mentioned to be potentially related to endometriosis, but only recently being investigated- due to the frequency and longevity of my flare ups now.
So I thought I’d see if anyone can relate to any of my story, as this is effecting a lot of aspects in my life and as a young women who is healthy (in most part), not being able to ‘get on with it’ is extremely frustrating, depressing and seems to only be getting worse.
Of course, I want to be clear, it is not confirmed and still under investigation, so I appreciate that it is not certain but after researching, listening to peoples stories and my recent consultations with one of the specialists (who with in 5 questions on my first appointment) said in his medical opinion he thought I do.
Anyway ….
I’ve always had ‘bad periods’ which were my normal -lots of bleeding for 7 days and bad pain ,on and off. I’ve had contraception since I was 14, which has either helped one symptom (mainly the excessive bleeding ) but heightened others (pain, nausea or bleeding) and after years of missing days of school, events or sports because of bleeding so heavy that I have to change million times or pain that I would throw up- I ruled it as I’ve been dealt a 💩 card.
As I got older, I learnt to manage it better but then I was offered ,on a sexual health visit, to go on the mirena coil as it could stop the bleeding (my dream) , after having a copper coil (which I had minimal pain but the worst bleeding).
When I had the mirena put in, I had no problems really, for the first year. My periods seemed to be a problem of the past till in 2021, a stressful time for me and most people after the pandemic, I had a really sharp pains in my low right, my leg felt tingly and I was so fatigued for two weeks and on top I was bleeding for that period of time.
I went up to the hospital and they thought it was my appendix, just a prelonged rupture. I was given stronger and stronger painkillers and nothing then they gave me morphine. I suddenly was getting ready for surgery- they checked just before and my appendix/blood results were fine. A male doctor said it was a ‘bad period’ I refused to leave because I was aware of my painful periods and over the many years of having one this was different.
They checked my ovaries and nothing, checked bloods again nothing and another male doctor said same thing or it could be pelvic inflammation (I’d just had my coil and tests done, so I knew it wasn’t that) till one of the other female doctors mentioned Endo. They said they would refer me and after a few weeks I found out the male doctor didn’t put it through even after saying they are gonna send it to gynaecologist when I described to all of them about my ‘bad periods’.
Life carries on and yes I still had those episodes but like a couple of days and I’d miss a day of work or maybe not go out for that day.
Over this time, I’ve become increasingly more tired, nauseous, urinating so frequently and painful periods - I don’t bleed so the amount of pregnancy tests I’ve taken is insane but my emotions especially have become so intense so always in my head to go to pregnancy even if I have the coil.
Called GP, they said potentially diabetes (didn’t sound right) but after looking up my symptoms I mentioned endo. I had blood test ruling out any sort of UTI or diabetes but I still I couldn’t stop peeing every 5 minutes after a sip of drink to the point if I wait it is uncomfortable I can feel like a pressure.
I went again because the month before, I had those sharp stabbing pains during my period to the point I have to stop walking ( crouching in ASDA in pain is not what I pictured my 20’s) and even at work I would have to leave the room to sit down. They referred me to gynaecologist specialist and like I said he asked about if my periods are heavy, painful and if I have pain during intercourse which I never new not everyone has that (it’s not always or during but it happens a lot especially after). He said that it’s not right especially at my age, he’s sent a referral (brilliant), I should come in if I have days like those and consider changing my contraception.
A week after my appointment, I woke up having same pain on the Sunday night, got an emergency appointment next morning, they said get some over counter Co-codemel and I was prescribed some anti sickness for the nausea. Then had to go again because not even a bit of improvement from that 3 day course, then another doctor gave me naproxen and dihydrocodeinone and after another appointment, changed the naproxen to Mefenamic acid. This has just dulled it from 8/9 to a 5/6 on a pain scale which is bareable as this is the level I’m normally at for a few days but still not totally out of pain- I tried to go back to work after a couple of days but I couldn’t focus because of the painkillers (I think, lack of sleep, anxiety of my families history with cancer and let’s be honest the constant dull aching in my mid area ,back and front) but also once they started wearing off on that 4 hour mark, I was back up to 8/9 (leaving work in tears).
It was /still is effecting my mental health, because not being able to do things due to being out of it or being in constant pain or having the false hope that I’m fine because I haven’t felt pain for more than a few hours is overwhelming. I have been prescribed some Amitriptyline ,to help with both pain and anxiety/depression (it has been a long time coming for me to address my other mental health issues not only in correlation with this) which with all the medication, is hard to tell if or when it is helping, as I’m either anxious, unmotivated and occasional pain or doing more being in pain, frustrated and having to sit out.
As soon as I start doing more (like having a shower, going up and down the stairs and cooking- little tasks) I’m exhausted, I feel the pain starting to increase and it similarly happens with when I’m stressed or overwhelmed .
If you have managed to make it to the end, it is very appreciated and I’m still at the point at the moment, I’m still not sure when this is gonna get better or more manageable. If you have any advice or suggestions for pain management or that it has happened to you it would be amazing as right now the not knowing anything but feeling like my body is giving up, is a little hard even with the amazing support network I have at home.
P.S I also appreciate the efforts of the GP’s that are helping me out and I understand it isn’t a quick process so I do feel heard just more helpless, there have been strikes at the hospital so I haven’t gone as not much available.
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Butterfly0509
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I really feel for 🥹 I am in a similar position to you but I'm a lot older (48) and have a provisional diagnosis of Adenomyosis (The evil twin sister of Endometriosis). I have the frequent urination too and bowel issues/bloating. The one thing I would advise is to buy a plug in heat pad. I got mine from Argos but they sell cheaper ones on Amazon. It is the only thing that helps my pain. I find it even better than Morphine pain relief wise. Epsom bath salts help too and I find yoga for Endometriosis really good. I find videos on you tube.I really hope you get some answers soon 🙏 X
Thank you so much just having someone resonate just I can’t express how refreshing and yeah I have lots of bloating but will take on board the plug in heat pad (I switch between a hot water bottle and this electric one but only lasts as long as my power bank so I’ll have a look on Argos! ) and I do love a bath so Epsom bath salts. I use to do yoga class but never thought about the benefits to low intensity cardio plus meditation. I’ll have to have a look for some to do at home while I’m off even just the meditation side. Thank you and hope you are well, I’ve only heard of Adenomyosis today looking at other people posts I’ll have to have a look what it is. X
Bless you hun. Completely relate, it takes a toll on your every day life. I feel like I’m walking round like a zombie. I’m 26, I’ve always had problems with my periods since 15, then they started going worse at 23 same time I started developing IBS symptoms.
Unfortauntely NHS was helpless to me and I found out about Endo through TikTok. I paid to see a private specialist just one consultation and it was the first medical professional to validate my problems. She instantly said it sounds like Endo and my next steps are surgery, I have my lap end of this month and I can’t wait to finally have a diagnosis and start to understand what’s going on and start trying to “fix” it.
It does take a toll mentally. I constantly have to cancel my plans, my life goes on hold when I’m on a period. It’s horrible and I think it takes the toll mentally simply because 1) no one seems to understand Endo so they don’t understand how you feel and 2) how shit medical professionals are at helping you 3) you are made to think you are dramatic or crazy when you aren’t
I literally went to the doctor last week as I’ve had extreme nausea, dizziness and toilet troubles, I explained I had suspected endometriosis and she didn’t want to hear it what’s so ever. Thought I was pregnant due to the sickness when the test was negative she didn’t know what to say but didn’t want to address Endo🤦🏽♀️
It’s a mess tbh but I’m just so great full for this group. I’ve got so much great support on here! Xxx
Ps: in terms of managing. I have electric hot water bottles, heat pads, tens machine - these are all amazing! I get severe pain in my rectum and the heat pad is perfect for this.
For period pains I layer up cocodamol and ibuprofen for the first few days as well as hot water bottle and tens machine.
I take peppermint capsules and drink peppermint tea for the nausea. Oh and I love polos for it!😂
I also take mebeverine to try help my bowel problems.
But I think my best advice is to rest and know when your body is struggling.. I used to push my self constantly and it just makes it worse, I always allow my self to rest now x
Thank you for your response and your advice, I’ll have a look into them and especially the tea -I love tea in general so any excuse but the capsules would be a good addition (as I’m taking a lot of meds and a holistic approach is what I usually go for or at least in harmony with what has been given)! It is so helpful to hear your journey and I appreciate you taking time to respond to my post. Wish you well and I agree it feels good to be part of this group, it can feel very isolating when you don’t have people who understand what your going through x
Sorry to hear you're struggling 😞 it's a very long journey but hopefully you will get some answers soon. Is it lower right pelvic pain you experience? It is daily? I also have pain there most days and I do have endo
Thank you for your response and yes from peoples experience it is definitely going to be a long journey but hopefully I’ll get some answers soon and I’ve been given some good advice to manage the pain!
Yes it is on my lower right and pelvic area, it feels like it’s in my hip (it doesn’t feel like just hip pain but in side there) it can be tender but it isn’t always consistent over the two years it comes and goes varying in length but recently it has been very consistent- sometimes (which I had a few occasions before) feeling like it is tingling spreading down my leg and around my back which is now every day. I have had it on both sides at the same time but that is handful of times during my 3 weeks off. It feels also as if I’ve hurt my hip but I haven’t worked out for months and I move a lot with my job but this is a sharp pain in a certain positions either bending or stretching in that lower right and then tingling comes as I described to my leg/back.
Glad you have recieved lots of good advice. It defo sounds like you have endo as have seen people say that they get hip pain and leg pain as well. I do get lower back pain sometimes. Defo push for a diagnosis
Hi, your story sounds very similar to mine, the doctors don’t really have much of a clue, I was told I had a back spasm once and was sent away with diazepam, I also had an ultrasound and they told me I had cysts on my ovaries, it was only that my best friend had endometriosis and said to me you have got it too I’m telling you so I demanded a laparoscopy, I was then diagnosed with severe/stage 4 endomitriosis, I also have adeynomiosand fibroids too, when they did the laparoscopy they told me that there was that much of it the endomitriosis they could not remove it but to get a hysterectomy (I have yet to do this) this was at the age of 37 at this point I had suffered for years, when I was a lot younger the drs also said to my mum that I had abdominal migranes 🙄 I have been sent away from the drs/hospitals numerous times with all of the symptoms you have mentioned above, I also suffered really badly with sciatica and was sent for an mri scan which showed I have a slipped disc, therefore when I am due on my period or ovulating and having a flare up this is agony, I have been given naproxen, trans anemic acid, ménafemic acid, tramadol, the list goes on, however I have found acypuncture & changing my diet has really helped me, cutting out dairy, alcohol, red meat etc. I do also take Spirulina and Tumeric too which is good for anti inflammatory. I have done a lot of research too, but I think it is just trial and error of what works for you unfortunately. Good luck in finding the answers you need/what works for you x
Thank you for your response and advice, a lot of people have mentioned diet is a big factor in managing this so yeah I’ve never really agreed to dairy but I do love dairy so I may need to cut it down (I have with milks but maybe with other dairy products as well as others you have listed) and acupuncture is new to me but I’ll have a look into people in my local area because I’ve heard it has lots of benefits not just endo which would definitely help. I didn’t know that about turmeric and spirulina so I’ll have to have a look at how to add these to my diet. Yes lots of trail and error but I’ve been given lots of tips/advice so I’ll have to get some products and do excercise recommend.
Sorry to hear you have suffered a long time (lots of women have said this both on this platform and when I’ve spoken to some people in person) I hope you are well (or at least managing well) and it is such a massive decision to have a hysterectomy.
You mentioned about your hip, I have on my lower right and pelvic area, it feels like it’s in my hip (it doesn’t feel like just hip pain but in side there) it can be tender but it isn’t always consistent over the two years it comes and goes varying in length but recently it has been very consistent- sometimes (which I had a few occasions before) feeling like it is tingling spreading down my leg and around my back which is now every day. I have had it on both sides at the same time but that is handful of times during my 3 weeks off. It feels also as if I’ve hurt my hip but I haven’t worked out for months and I move a lot with my job but this is a sharp pain in a certain positions either bending or stretching in that lower right and then tingling comes as I described to my leg/back. I don’t know if this is similar to how you felt but this is the most uncomfortable part as it is all day.
Not much time so excuse the brevity but others here will know these too :
Look at Book( and Instagram feed of same name ) Heal Endo by Katie Edmonds. Great resource. Lots to help understand and pain.
Go to and listen to Dr Angie Muller talking to @leah-brueg talk 56/57 ? On her podcast link on pelvic physio great for pain management etc and understanding what’s happening.
Try some at @corerecoverypt
I use a combo of all above plus Curable App ( free trials available) and Nortriptyline low dose only both from my GP .
This could be me except 30 years ago when one doctor I'm Liverpool told me endometriosis didn't exist. I've had tertible periods my whole life. Fainting, throwing up, painful sex, terrible PMS but nobody cared and I eventually normalised it. Then the peri menopause hit and there was no normalising that! I went in for a hysterectomy 5 weeks ago and they found endometriosis lesions had fused my cervix to my bowel and possibly left ovary. So all those years of being dismissed by doctors and told to get on with it have led me to this. I have learned a lot in my 50 years of living with it. Diet plays a huge part for me. Alcohol is no friend of endometriosis either is sugar or processed food. I can do caffeine and dairy but many can't. Find out what you can/can't tolerate. Vitamin D does wonders for me. From the sun not a bottle. Exercise is medicine. I run, do crossfit and quad skate and this helps. I prioritise sleep without fail and I try not to get too stressed these days as my ability to handle stress has changed. I have a heated fur blanket from Lakeland which is incredible. Heat in all it's forms helps me but again it's not for everyone. Lastly a good acupuncturist who specialises in endometriosis is worth their weight in gold. I see one regularly and it's changed my life. Good luck. Keep pushing! You sound brave and feisty which is exactly what you need to be with this condition. If I coukd go back and visit myself at 22 I'd tell myself to fight harder and not to live a life of pain. Xxx
Hi, I don't visit the endometriosis site on account of my age but I suffered from it decades ago.
Fenopron is an effective painkiller for it as it is an anti-prostaglandin ie stops cramps. It was on prescription. Phenylanaline is good in that it takes the edge off severe pain and lifts your mood mentally but I am not sure where you get it nowadays. I used to get it via the Endometriosis Society.
I found the worst pain with endometriosis was low back pain and there aren't really any painkillers for that.
The treatment I had which was really effective was to take the contraceptive pill not only continuously but double the dose, ie two pills per day at different times. In those days, this was Metrulen and subsequently Anovlar when Metrulen went off the market. It relieved all pain and I took this for 9 months, had a break of 3 months, then a further 6 months. I used to get a dark discharge in between periods, initially for about a week, accompanied by a dragging pain across the belly and low backache. I tried the contraceptive pill as it was supposed to be taken and it actually made matters worse, stopping the periods but having this awful slime all the time, and increased pain. (Bear in mind though that contraceptive pills in those days were much stronger than today so I don't know what doses you would need if you taken continyously.)
A diagnostic test for endometriosis in the old days was a trial of testosterone. After I took it for two weeks, the awful discharge stopped and I was relieved of all pain and felt on top of the world. I went abroad to work so I think did not take it as prescribed which was 5mg daily placed under the tongue for three months. I used to take it for a couple of weeks at a time. It got rid of the black slime and I had bright red painless periods. It also relieved deep painful intercourse.
For me initially the testosterone was a lifesaver. I was very slim (7.5 stone) but had a very heavy bust and it reduced that. It also helped my skin which had been very sensitive and relieved various skin allergies and I actually started to get a tan.
By the time I took the pill continuously, I was over 30 and suffering bowel problems. Endometriosis seems to be accompanied by cyclical bowel problems, ie you cannot defecate for two weeks from around mid cycle until the next period, and then you pass out because of the pain and there is blood in the stools.
There is a book by JA Chalmers, published 1975, entitled Endometriosis. I don't know if you can still get it but it is very helpful in understanding the condition. It seems that medicine has not progressed much since then.
Hun I had some similar issues and the pressure down below so bad I kept going to the a and e as pain was so bad and could feel like I wasn’t emptying bladder properly but I knew it wasn’t uti. I only have been diagnosed since April with really severe deep infiltrated endo in bowel and had a huge endometriomia removed which was purple / black in colour. Am now waiting for bowel surgery. Just had an mri so waiting now for a surgery date. As I’m struggling with severe nausea and severe diarrhoea but it happens as soon as I eat. It’s horrible as at work I feel like I live in the toilet. I was on the list though to have the cyst that I had removed but they then couldn’t find on the ultra scan but really it was still there . So because it wasn’t there they took me off the list. I then proceeded to have still so much severe pain that I couldn’t walk and was admitted to hospital with vomitting as was sick all day every day for 10 days and I wasn’t pregnant. If I now don’t have anti sickness meds this is what happens to me so as soon as o feel sick will take the meds now it happens after I open my bowels before it was after I ate something. Fast forward a year and a half earlier this January went to the doctors three times and twice to a and e in January as I was bleeding heavily and the pain was excruciating and I had the mirena coil and had had it in at that point over three years. Locum doc was like I think this is my gynea so I said that I was going to be part of a trial to see if I had endo and if it was mild to be selected for treatment to see if it was helpful or not. I said to the locum the pain I was enduring I couldn’t wait that long that I needed something to happe. As I was having a lot of time of sick and that I couldn’t afford to as have a mortgage and leave alone. This locum pushed for me to have emergecny lap on the nhs fast forward a few months they had a cancellation and I took it. Bare in mind my periods have been awful since I was ten years old and am now 37. Nearly 38 I was then diagnosed as severe frozen pelvis as well as all my pelvic organs mushed together and endo wrapped around all my siatic nerves. Please don’t give up try and push for your health. I knew something was not right when I would be down the doctors every month not being able to walk and the bleeding and pain so severe that I thought my insides were being ripped out of me. But the coil for me was a game changer but I think the endo would have been even worse if the coil hadn’t been fitted it was a male out of hours doctor that told me I needed the coil as I couldn’t sustain the pain and having injections for the pain every month. As nothing would help. It does take years for an endo diagnosis as they try and say it’s just bad periods or it’s just a little functional cyst or it’s just Ibs or it’s just a uti don’t get fobbed off and always ask for a second opinion. As I am waiting on an autism spectrum disorder diagnosis I always find it hard to stick up for my self. My mum thought I was crazy and that the pain wasn’t as bad as I was saying it was. I was literally in tears 😭 and normally I have a high pain level this pain is intense. So I listened to the doctors at time fobbing me off. But in the end as I had gone a and e too much I saw female doctor and then this locum knew straight away what it was. She fought my battle that day it’s horrible I wished that maybe they could have diagnosed years ago instead of now. After my bowel surgery I have opted to have a hysterectomy as I can’t stick this chronic pain. I’ve really hope for your sake you are seen swiftly xx
Hi Butterfly0509. I had the very same experience, not seeming to be able to take an active part in life, I used to put a little tinted moisturiser on so that I didn’t look so pale, and used soluble paracetamol because that acts faster, but a tablet that the gynaecologist prescribed shrunk back the endometriosis and gave me relief for around 2 years, then I had to go back on them again for around 6 months. Mine started at 21 and I went through the menopause at 48 and don’t feel anything now.
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