I am 30 years old. I started menstruating at the age of 10.
When I was around 14, I would have these random "attacks" of abdominal pain that left me crippled. There have been occasions my mum had to lift me out of the bath, because I felt like my insides had totally twisted. Now, I shower. But there have been times when even stepping out the shower has caused me to double over in pain.
My cycles are generally 27 days, with some spotting in between. Sometimes though, these can throw me a curve ball and I'll have a 12 day cycle, or a 42 day cycle.
Intercourse has always been agony, and I have experienced 3 miscarriages (that I know of).
When I was 19, I was finally sent to a specialist gyno, after years of battling. They had tried me on multiple different contraceptive pills, tranexamic acid and mefenamic acid. Nothing helped the period pains. I had an ultrasound which revealed some growths on my ovaries, and that my bladder did not empty itself fully. I never heard anything back, and I learned to "live" with the pains for a while, dosing up on codeine and mefenamic acid, heat packs and regular trips to the GP. I continued to try different contraceptive pills, and begged my GP to send me for further tests.
About 2.5 years ago, I changed GP. And I informed them of everything that had gone on, they disclosed that the gyno had requested my GP sent me for a lap - but the GP had failed to follow this up. Thankfully, the new GP surgery sent me back to the gyno (It took a lot of tears, a huge break down, and a confession of how much I am struggling). I took a diary of symptoms with me that I had been keeping for approx three months, outlining how often I get upset stomach, pains, spotting, etc.
I've had the pre-op assessment, just waiting for a date for the lap.
However, about a year ago, I noticed an ear pain around ovulation. It feels as if my ears are filling up with fluid, and the feel a little wet. I get sharp stabbing pains in my ears. The last few months (4 or 5?) I've noticed this has started to spread.. the ear pain is now accompanied by a pain my left shoulder, the left side of my neck, and my left arm.
I'm wondering if this is linked? I have seen some posts on here, where other individuals are saying they have experienced similar. Has anyone had an outcome? Or a diagnoses of what this might be?
And I'm wondering how long anyone else waiting for their lap after pre-op?
I'm really at my wits end with all of this now. I haven't had children and would like to have children one day. I'm constantly exhausted and in pain. Does anyone have any tips on pain management?
Please help.
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toffeechrisp
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hi 🌻somebody mentioned that pre op assessment valid for 12 weeks.
I have experienced pain in my left ear and left side of neck last year, during horrible UTI infection (3 weeks on antibiotics).
I am having my nose get blocked while I am sleeping (over a year now).
Also I have a lump on my left shoulder which make my arm aching sometimes. Last time GP said it is nothing serious.
Think all related to Endo.
I am waiting for hysterectomy now and will see if this symptoms get better after. I have no energy to go to GP now and ask for more tests and referrals 🤦🏻♀️
My pain disappeared after Prostap injections but I was very depressed after.
Thank you so much for taking the time to read and reply.
I'm so sorry to hear you're struggling. And I understand what you mean about going back to the GP. At one point, I felt like I was going crazy. I'm sure they're sick of the sight of me too.
Sometimes, it can just feel so lonely - it's nice to know we're not alone.
I hope you get some answers/relief soon. Good luck with the hysterectomy, that's a really brave step to take.
But I have hope to feel better after my operation because it is getting worse .
I can’t take antidepressants , so had 5 counselling sessions. At the end she said “you don’t need me, you know what you are doing and can manage yourself “ 😁
To be honest stories on this forum and instagram helped me a lot. I feel that I am not alone and lots of women are facing the same situation. 💛
I'd recommend keeping a tracker! I have an excel spreadsheet.. which sounds really lame, I know. But every day I update it with what I've felt (pains, mood, etc). It really helps when you go to appointments.
I was admitted to a&e with chest pain, radiating down my left arm and neck, jaw etc.
A&E didn't find anything. So I kept an eye on it for a couple months, and eventually I told my GP.. I've had this symptom, it's on going, it's related to my cycle.
My GP sent me to the cardiac clinic (who obviously didn't find Angina)..
I’m in the same boat of you with frustration and exhaustion of the process.
I’ve had 2 laps and on the second lap I was diagnosed with endo. Both my laps were done at the endo specialist hospitals BCGSE (not sure what it’s called).
Anyhow I’m 30 as well, don’t have children and considering to freeze my eggs later this year.
I take gabapentin for nerve pain in my legs. I also take co-codamol and mefenamic acid tablets to deal with the endo and my polycystic ovaries pain. I’ve been on this medication for years it doesn’t help. I use hot water bottle and have the scars on my thighs and stomach for using it for the past 3 years. I also use a tens machine which I recommend as it helps ease your mind of the pain.
On Monday I had an appointment with the pain doctor and I’m going to get nerve block injections on 2 types of nerves. I’ve had it done before and I had no pain for 1 month then it came back. The doctor wants to know how my body responds to the pain.
To be honest I’m really fed up and waiting for therapy on the NHS as I really need it. The only thing I can say is not to give up and continue to go the GP and gyane and maybe try the pain clinic as we should have to live with this pain and have our lives robbed from us.
Forget to mention I’m on the progesterone tablets. I did the coil 3 times but my body rejected it and I did the injection. The tablets has only helped me not have a period as I was told by my gyane that periods make endo worse. When I want children then that’s when I’m allowed to be off the progesterone tablets.
It's funny you should mention nerve pains.. my doctor referred me to neurology and they diagnosed greater auricular neuralgia - I'm battling with them now to explain that the symptoms are linked to my menstrual cycle. I've looked in to it, and there is evidence that women can experience nerve problems linked to endo. I honestly believe the specialists/gp's I have seen just aren't educated enough in the female hormone system. I use a TENS machine too. I'm screaming out to anyone who will listen that everything gets worse when my oestrogen drops but no one has taken time to aknowledge the evidence I have (I work in health care, within the NHS, and yet I'm not taken seriously at all).
Have you tried DBT? As I've heard this is the best route when treating the emotional impact of endometreosis. (Another thing my GP is failing to hear.. I'm just being given antidepressants and told they will be increased soon).
I don't want antidepressants.. I mean, I probably am a bit depressed, but that's because of the pain I've been in for two decades that no one is treating.
I really really hope you have some relief when you have the nerve injections.
My endo nurse has advised me of turmeric and that it can help with inflammatory pain. I got some capsules from Holland and Barrett.
I also suffer with ear pain but have done since I was about ten so it is odd that you mention it and head aches in the left side of my head but I’ve always been told they are stress related headaches.
What you're telling me regarding your symptoms, it sounds like endometriosis has spread to your lungs (diaphragmic/thoracic endometriosis)! Do you take natural remedies (curcumine...)?
Feeling super sorry for myself today so reaching out to the community.
Had a bad day yesterday and needed gentle activity. My partners kids are over (every other weekend). He took them for a bike ride, which is super cool. They should absolutely spend time together without me, I think that is so so so important.
Today, I've got up, house is empty. They've all gone on a bike ride again, but took the food that was in the fridge (I guess they're having a picnic).
I feel like an A Hole because I'm feeling sorry for myself for feeling "left out," due to being left home alone, all weekend.
It's not that I want the kids/him to sit in the house with me - but part of me thinks we could have done an activity everyone was able to do. I feel like it's a little inconsiderate, considering it's both days of the weekend I've not been able to participate.
Weekends are the only time we get to spend together (he works long hours, I'm full time but hybrid so I spend a fair chunk of my time working from home).
The other part of me, thinks no one else should have to miss out because I'm having a flare up. Like I'd never begrudge my partner and his kids doing something fun - they're not the ones with the problem, so why should they miss out or be limited?
THIS IS HOW ENDOMETREOISIS TAKES AWAY YOUR QUALITY OF LIFE.
the frustration and rage with the consequences of this beast are so intrusive ontop of the actual illness itself. Feel for you and you are right you can’t let it ruin good relationships … but it’s hard to manage the disappointments ontop. I find it challenging making decisions around future planning and if am making it during a flare ( how long , is it temporary or permanent change should it be a consideration or not yadda , yadda ,yadda. Enough to do anyone’s head in ). All I’ve learned is I try ( don’t always succeed 😳) not to deal with it when am already flaring and feeling grim . It usually turns to complete shithouse if I do, now I write down and promise to tackle it when am feeling more like. It’s relieved me of the anxiety of having to deal with it immediately to manage the stinging hurt whilst feeling crappy and spares those around me the pain of not being able to fix it. I know the flares can make it hard for me to see the positives and I can feel resentful. We’re only human.
Thank you for making me feel so valid and seen. Your suggestion is actually a genius idea. Because you are right - things that upset us do need addressing, but probably not when our emotions are already running dangerously high. I really appreciate that.
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