Hi all, I'm curious to know if what I'm experiencing could possibly be caused by endo or if anyone else has experienced anything similar....
I am 35, was diagnosed with PCOS in my early 20s. I'm not on the pill or anything to manage it (due to having DVT once in the past caused by the pill). I normally get 4-6 periods a year and they vary in flow and pain levels. Generally, though, they can be fairly painful for a few days.
Last week I had quite a bad period - it was very painful. I had to take co-codamol for 3 days and was not able to work much for a few days. Whilst it wasn't the heaviest period I've ever had, it was moderately heavy and I did get a few blood clots (about the size of a 5p piece), which is unusual for me. My period ended at the weekend and I felt more-or-less fine on Sunday and Monday pain-wise. However, this morning (Tuesday) after being awake for half an hour or so sitting up in bed, I developed very severe pelvic pain. It was horrendous. I don't think I've ever had pain quite like it. I spent about half an hour or so in the bathroom this morning lying on the floor, crying with pain. I had to take co-codamol, and since that kicked in, I've felt better. A hot water bottle has also helped. I also felt a little better after going to the toilet this morning. However, I think the painkillers are starting to wear off now and I still have a bit of pelvic pain, although it's not as bad as this morning.
Is severe pain soon AFTER a period connected to endo at all?
Any advice/shared experiences would be much appreciated.
I should add I do plan to keep a detailed symptoms diary and go to the GP if this continues. I am really hoping it's a one-off.
Thank you
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snowflakemidnight
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Good idea with the diary. Given that even an ultrasound booking can take weeks, might be a good idea to speak to GP sooner rather than later. Endo is unlikely to show on an ultrasound, but will rule out other things.
I had period pain for years, it was only at the end of last year I was diagnosed. One question the consultant did ask was did I get clots, and yes, towards the endo of a period.
Given I left it too long, I’d advise anyone to get checked out.
The endo UK site has great info regarding diary and consultation.
Thank you for your reply - I really appreciate it.
I seem to be a lot better this morning, although there is still mild pelvic pain, it's nothing like it was yesterday. I will start to keep a more detailed symptoms diary - at the moment, I don't think I have enough classic endo symptoms for a GP to be too concerned. I think I need to see how I go for a while.
That's interesting you get the clots at the end of a period. I don't often get them at all, but on this occasion, had three large-ish ones (large for me, anyway) in the middle of the period and one smaller one at the end.
The endo UK site seems very good - I'm going to print off the symptoms diary.
I may not have been diagnosed very long in terms of most, but have a fair bit of experience with the system as I have a tendency to want answers, that and health experience 🤣
Hi, I just wanted to thank you again for your comment in Oct. I have now been 'unofficially' diagnosed with endo as I had scans at the hospital, and the GP has said to me that my scans clearly show an endometrioma on my ovary. The sonographer said to me during the appointment that they got a very clear scan because I am slim. I know I will have to wait for a lap to confirm the diagnosis though. Still, it's good to have things taken seriously, and to be more certain of what is wrong, and that I'm not being a drama queen!
It's a little overwhelming, but it's also a big relief. I will be very nervous about the lap as I've never had surgery before. Yes, the GP has referred me to gynae but she didn't have any idea how long I will have to wait. I expect it will be ages, thanks to Covid!
It is very overwhelming, perfectly natural for this. It’s like suddenly there’s an answer to all the pain, but not necessarily one we wanted. 🙂
I hadn’t had an op before this year and was petrified before the first, in reality it’s not anything like our imagination tells us 🙂. The staff are amazing, and know what they are doing. One minute your asleep, the next you’re awake. The second was like a walk in the park 😆, probably easier than walking 😂
Once your in the system do check about cancellations they always crop up. Loads of info here about ops, really nothing to be worried about 🙂
Thanks so much for your reply. Fingers crossed the lap will be okay, when I eventually have it.
Weirdly, despite my anxiety about the surgery, and my worries about more pain to grin and bear before that, mostly I do feel just so very relieved to have an answer. I am sure now that I could have had endo since my early 20s, as there were subtle signs then too, maybe even my teens. So, I feel like all these years I wasn't being dramatic or exaggerating my pain and fatigue. I feel a lot better about myself and kind of amazed at myself for putting up with it for so long! I must be stronger than I thought
Anyway, thanks again for your response. I hope you have a good Christmas
Hi yes this is a symptom of endo sadly. I experience the worst pain outside of my period. Endo is a full body disease not just a bad period as many people think.
For me the worst pain is about 3 days after my period has finished, then about 5 days before my period starts! So frustrating.
You should definitely record your symptoms or track them to help explain to the specialists.
I hope you get the help you’re hoping for from them!
Thank you for your reply - much appreciated. I hadn't realised pain after the period is a thing. That is a bit worrying.
Thankfully I seem to be a lot better this morning with only very mild pelvic pain. However, I'm definitely going to keep a detailed diary of my symptoms and if this happens again, I think I will more strongly suspect endo and will definitely see the GP. I'm going to print off the symptoms diary from the endo UK site and keep track of everything.
Is there a possibility that you had a cyst rupture? I’ve had them burst and it’s super intense pain for a short period (a few days). Endo is something that will cause you pain throughout the month on a consistent basis. Given this is your first flair I wouldn’t go directly to Endo quite yet. I would definitely keep a diary of your pain and when you get it. Try and find a pattern to it. Do you have pain with bowels, urination?
I no longer get a period because my Endo is quite severe (we’ve chemically stopped it). Even when I had a period I still had pain throughout the whole month, I still do even after my lap in February (I also have adenomyosis so it causes me some trouble).
Now if it is Endo, not being on a contraceptive will cause it to grow. If you let Endo just party away it’s going to cause a ton of problems. Endo feeds on estrogen, so the more your hormones are out of check the more the Endo grows. I would highly recommend trying a contraceptive to try and alleviate some of the pain. There are lots available now, there’s taking the pill back to back, lupron (depot), vissane, iud, etc.
Could be - I really don't know. I didn't get any bleeding though - not sure how normal that is to have a cyst burst with severe pain but no bleeding?
I probably should have elaborated more in my post... I'm wondering about endo also because I've had a couple of people suggest endo to me as a possibility. I've always had quite painful periods and pain and bloating at other times too when I don't have my period. I often have to cancel on things because I feel unwell with period pain and have missed a lot of work days in the past when I used to work full-time, due to period pain. I have always put it down to the PCOS being the cause, and maybe that's all it is. I also have had problems with severe pain during sex in the past - again I put it down to PCOS and anxiety (as I have an anxiety disorder).
I sometimes get a tiny bit of pain with my bowels, but nothing severe. No bleeding. No pain with urination or bleeding.
I've been told I'm not allowed to go on the pill again because of a past DVT so if it is endo, I'll have to see what they advise.
I've decided to call the GP tomorrow. I don't have much pain today, but there's still a tiny bit and I do seem to be very bloated. I probably should have called them today but was too anxious! Need to psych myself up.
I’m sorry it’s taken me so long to reply but I tried 3 times, got distracted and the page refreshed all 3 times 🤦🏻♀️.
I’m so sorry you’re dealing with this. If it is not a once off occurrence then yes yes yes please get on top of your doctor. I’m sorry the way it was worded made it sound like it has only happened once or twice. Please don’t let this go on too long.
I have 17 chronic conditions including endometriosis (stage 4 recto vaginal), adenomyosis and fibroids. I say this because I have done a ton of research on my conditions and anything along the way I thought might also be going on lol. From everything that I’ve read about PCOS, you shouldn’t really have much pain from it. Same goes for adenomyosis, it causes uncontrolled bleeding. ☹️ Endometriosis is usually the culprit for severe pain. The type of pain where no medication takes the edge off. When I was getting a period I would have this hot poker shooting pain up my rectum that would last minutes and almost make me blackout. It’s not the “normal” level of pain that you need to worry about. But there are other gynecology conditions that can cause pain but no where near as bad as Endo.
Are you having pain all throughout the month, even when you’re not ovulating or on your period? This is a big red flag for Endo.
I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. So just because you can’t use the pill doesn’t mean you can’t use the other. I have thrombocytosis so I can’t use the pill but I can use vissane, lupron or iud. You can only have so many surgeries before you’re left in permanent pain.
Do you have an advocate that could sit with you during your call and go to your appts with you? I have found my husband to be invaluable. I had a GP who laughed at me when I asked about Endo (I had stage 4 to the point I almost needed a colostomy bag), she also missed and ignored a severe concussion for a year. So please don’t feel bad about having doctor anxiety, it’s real because we’ve been told we’re over reacting. After the accident that left me with a concussion I couldn’t work and well now I can’t have babies. The single biggest piece of advice I have for you is to listen to your body. You know it best, no one else does.
There are a few things you can do for yourself now..
1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.
2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing! You guys also have some great options in your shops...I’m from Canada), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.
3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.
4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.
5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.
6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition. They tend to only do ablation (basically removing them top and leave the root). Instead of the gold standard of excision where they remove the whole implant. I have read so many stories of woman either coming out and they find no Endo or are still in just as much pain.
Sorry about the novel! Please feel free to pm me if you have any questions. You got this!
Thank you for your detailed reply – I really appreciate you taking the time, so please don't worry about taking a while.
So sorry to hear of all your conditions. That must be tough.
The severe pain I had on Tuesday morning was pretty much a one-off in terms of its severity. Well, I did get something similar happen once before about three years ago, but that was during my period, whereas this time my period had completely finished when the intense pain struck. Since Tuesday I've had some milder pain, but not bad enough to need painkillers.
I don't have pain all the time, no. This is what makes me doubt it's endo, although some ladies with endo have said they don't have pain all the time.
I generally get some intermittent period pain for 1-2 weeks before it starts, and then more moderate to severe period pain during each period. I need cocodamol to take the pain away for a few days every time. I wait until the period starts before I take it, as I know you're not meant to take it for long. It usually helps, but I usually still feel some pain whilst on it. I also get some slightly milder cramps at other random times too. Sometimes, I get pain and I'm convinced my period is starting, but then it doesn't. I have no idea whether any of the pain at other times is ovulation pain because I have no idea if/when I ovulate – I have no pattern to my cycle. I was told years ago by a GP that I probably don't ovulate often. My cycle is totally irregular probably due to the PCOS. I do get a bit of pain in my rectum at times too, but not as bad as how you describe it.
Anyway, I'm hoping to speak to a GP soon so I will keep you posted. It's really hard to get appointments in the UK at the moment with the “second wave” of Covid happening. I've not managed to get one yet, but will try again next week.
I am also now wondering if perhaps my period triggered something like IBS, as I have some of the symptoms of that, but not all, so it is confusing. I definitely need to speak to the GP as it's very easy to go round in circles when trying to self-diagnose!
Thank you for all the useful tips! I will give those a go.
Hi, I just wanted to thank you again for your comment in Oct. I have now been 'unofficially' diagnosed with endo as I had scans at the hospital, and the GP has said to me that my scans clearly show an endometrioma on my ovary. The sonographer said to me during the appointment that they got a very clear scan because I am slim. I know I will have to wait for a lap to confirm the diagnosis though. Still, it's good to have things taken seriously, and to be more certain of what is wrong, and that I'm not being a drama queen!
This made my day!! I am so glad that you’ve finally been treated kindly. It’s sad that we’re just considered “hysterical” and fobbed off. People ask me how I do it with 18 chronic conditions. But the thing is they’re all just a bunch of scary “hysterical” symptoms. When you get a diagnosis, it’s much easier because you finally know what’s causing it. We can make choices about it and learn about the things that might help.
Keep on top of them and push for a lap. Pain is not indicative of what stage you are. I had severe pain with stage 4 but the next person might also have stage 4 and have little symptoms. 💕
I really didn't even seriously consider I might have endo until the last few months. I assumed all my period issues were down to PCOS. I suppose there were times in the past I thought, maybe I had endo too, but then I would compare myself to a friend who has it and think, she has so much more pain than me!
I feel so relieved, although also anxious about having surgery and how bad things will be.
I am being referred to a gynaecologist next so will definitely push for a lap! I want this endometrioma removed!
Thanks again for your support Hope you have a good Christmas!
Thank you for your reply! I had no idea endo pain was worst at the end of a period. I do hope it's not endo but at the same time, would rather that than other things. Going to call the GP tomorrow I think. x
I think it's because the new growths settle in their space causing pain.because my endo is on the surface it's really painful as it's just under the skin
My pain was always a week after my period started. Never had pain with my period. I insisted on an ultrasound to see what’s going on as I kept getting robbed off. Turned out I had a rather large endometrioma on one ovary. Never felt so good saying to the doc told you so.
Thank you for your reply! That's interesting you don't have pain with your period. I always have.
Ha, I know that 'told you so' feeling with docs so well - one didn't believe I once had a DVT. The doctor had to ring me up to apologise after my blood tests confirmed that I was right!
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I probably should have called them today but was too anxious! Need to psych myself up. 
Is this my pain?
2 days after period...?
Is this common? Pain on the run up to period, during and after
Is this endo?
Is this endo belly?
