Endometriosis UK
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Is this similar to your endo experience? (Please take the time to read, sorry its so long!) Does endo hurt when not on your on your period?

My doctor really suspects that I have endometriosis... (sprry its so long!!)

I know that i've had long, painful, heavy periods for as long as i can remember, with large clots (sorry! tmi!). But i never really thought much of it. All my friends said that they had bad cramps, so I just thought it was normal. I remember a few years ago though, I started experiencing pain when I went poo on my period and I brought it up to my doctor, she said that my uterus probably sat a bit closer to my bowel, causing the pain and my fibromyalgia probably made me more sensitive to the pain, so i sort of just dealt with the pain as a regular part of my period.

I remember though, August of last year I was working at camp and was having a shower when all of the sudden I had very sharp, pulling cramps. I had never had cramps like this before so I remember this day. I remember feeling out of breath and unsteady in the shower, holding back whimpers of pain. The next month, I had the same thing, I was on the bus on my way to school and suddenly got very bad cramps, I was squeezing my backpack, hot and sweaty and feeling out of breath. That day I went to get my nails down and when I stood up, my period just gushed out, completely going threw my underwear and soaking my jeans (sorry tmi again!) After this, my periods were heavier with large clots, but I remembered my doctor saying clots were normal so i thought i was just having a heavy period or something. I also was experiencing pain when I peed and my bum pain was worsening, I had to hold on to the wall when i pooped because it felt like someone was stabbing me, and I couldn't sit on my bum when I was on my period because it was so tender and so sore and I would get stabbing pains.

In June, my period cramps were so painful, they brought me to the ground in the kitchen, very sharp cramps and a pulling cramping feeling in my thighs. a few weeks later I got home from work and had a sharp pain in my side, I thought it was a gas bubble because ive had those before. I tried a few excersices to get things moving around, but it was too painful, I tried to go to the bathroom but nothing would come out, I was bent over in pain, if i stood up properly, it felt like something inside me was ripping. I went to work the next day serving and would get sharp pains but thought it was just gas, i also noticed that I really had to pee but when I went only a small amount came out. Around dinner time I noticed that i had been sweating alot more than usual and was feeling very hot, the pain was very sharp and made it difficult to walk, again i was feeling short of breath because the pain was so bad, I was nauseous and about to puik but nothing came out. I only went to the walk in because people at work told me to, I was convinced that it was just gas and wasn't excited about a doctor telling me I was just constipated (i have irritable bowl). The doctor saw me and said that she thought it was a bladder infection (they did a urine sample) but it could be my appendix because it was on the right side. Even as the appointment was going on, I could feel the pain growing and getting worst, by the time I was paying for my prescription I was crying.

The doctor told me if the pain got worst to go to the hospital, I had to wait for my dad to come pick me up and even in the short car ride, the pain was increasing so we went to the hospital, because I remember thinking if this was gas, there had to be a reason why it was so bad. The pain started in the right side and after a few hours went to the middle and the left side (near my ovaries and belly button). After an ultrasound and MRI, the doctor came in and said that they couldn't see anything but she suspected that I had a ruptured ovarian cyst and that the blood and fluid were irritating my other organs. They gave me morphine (which barely helped with pain) and send me some with 2 morphine and prescription for Neproxin.

I had pain in my left side now for a few weeks. Next period, I had very shap painful cramps again but worst than cramps I had experienced and the pain in my bum was unbearable so I tried a morphine but it didnt help at all. I went to the walk in and the doctor said I may have another cyst and to take the neproxin.

Few weeks later (when I was ovulating) I had a sharp pain in my left side, similar to the pain I had on the right side (where I had the ruptured cyst). I went to lie down and suddenly, I got an intense almost wave of pain, feeling like it was in my bowl, and it just kept growing and growing, and I had a stabbing pain in my bum, couldn't sit on it. I was sweaty and my heart was racing. I went to urgent care (heart rate was at 135 bpm) I got a blood test and they took a urine sample. It was difficult to stand up completely, because again it felt with something was pulling and ripping inside of me and my bum hurt so bad I couldn't sit on it, i was crying in pain. I waited 5 hours for the doctor to see me and ofcourse by this time, my pain had subsided. The doctor walked in and said that I didnt look sick (which hurt me and made me feel stupid for going to the doctor) and said that maybe scar tissue from my previous cyst had caused my bowl to twist which can be extremely painful, however he did no diagnostic testing.

I had to wait a month to see my doctor because her schedule was so full. i saw her this week and she suspects that I have endometriosis and has put me on birth control (which i'm yet to start, because you have to wait until the first day of your period. Now my doctor told me that the thing that makes her suspect it is that the pain comes with my period. I've looked up endometriosis and was wondering if endo can also hurt when you are not on your period? I'm noticing this month that I am feeling very tender and getting pains in what feels like my ovaries, and my bum hole is feeling a little tender when I sit on it or poo, but no where near the pain i have when on my period. I am trying birth control for 3 months and then going to see my doctor. I was just wondering if this sounds like something you guys have experienced? I'm nervous that I I do end up getting the surgery to diagnose me, they wont find anything and i'd just feel so dumb... especially since im noticing some pain outside my period, does anyone experience this as well?

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Endo will often start with period related symptoms such as heavy, painful bleeding and cramps. But as it progresses the symptoms are usually experienced at any time of the month, especially when the bowel and bladder are involved. This is because as the disease progresses scar tissue (fibrosis) develops that joins organs/structures together and compresses nerves. Since this pain is not controlled by oestrogen it can occur at any time and can end up being constant, perhaps with more pronounced pain at period time. Typically there will be sudden stabbing pains, back pain and referred pain to the bottom and legs such as you are describing. The most common location for endo is in a place behind the uterus called the pouch of Douglas and the uterosacral ligaments that join the back of the cervix to the back. You do have all the signs of rectovaginal endo which must only be treated in a specialist endo centre. Interestingly RV endo most usually affects the left side.

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Thank so so much for replying and taking the time to read my post!

That makes sense... I'm only 21...

Right now i feel like i have period cramps, even though i'm not on my period, its defiantly not too bad or severe, but just a sore and not a good feeling... I do feel a bit constipated as well... Endo does cause constipation as well i have heard... have you experienced this feeling before? would you say its probaly more because of possible endo or im just constipated? lol

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That’s another symptom I get, period type cramps or pains when not on period....I haven’t had constipation but I read that endo can cause constipation and/or diarrhoea. The constipation could be endo but could also be unrelated to gynae issues so talk to your Dr. I noticed that I get regular bowel movements and diarrhoea that happen after the periods but it took me a while before I linked the symptoms to gynae problems....

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IBS type symptoms can be hormonal. In the second half of the cycle progesterone predominates which slows intestinal transit and can lead to constipation. Just prior to a period progesterone is withdrawn which will then often cause a rush of diarrhea. So this can apply to women with or without endo. Also progesterone is anti-inflammatory so its withdrawal prior to a period contributes to period pain. But endo on the US ligaments is very close to the bowel (the ligaments go round either side of the bowel) and inflammation from endo there can irritate the inside of the bowel causing IBS type symptoms. You say you have IBS but with symptoms potentially suggestive of rectovaginal endo it is possible that that your IBS is actually a symptom of endo rather than incidental. The ESHRE guideline reports the high incidence of women receiving a diagnosis of endo having a prior diagnosis of IBS. Constipation and pain with bowel movements at any time rather than cyclical may be more suggestive of deep disease.

Have a read of the first chapter of the ESHRE guide which is very useful in explaining the typical symptoms of endo that doctors should be looking out for:

eshre.eu/Guidelines-and-Leg...

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Wow! Thanks much! Your very knowledgeable! I will check that out and bring it up with my doctor at my next appointment of course (:

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This is such a helpful reply and description. What you describe sounds exactly what I experience, it makes so much sense. I was wondering, did you find this out through your own research or have you had this explained to you by a medic? I've just felt the gynae and gps I've spoke to since I've been diagnosed really didn't know very much and couldn't account for my constant pain (or fatigue) the way your description does. I have been referred to the specialist centre and they've ordered an mri and now a ct scan to plan surgery bit I've yet to meet with them and I've felt so in the dark. If it wasn't for this site, I'd be so lost.

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I have done a lot of research and run my own endo support and information group.

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I have just messaged you about this.

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Hi there!

Sorry you’ve been through so much!!

I can relate to a lot of your symptoms. In particular, you mentioned the pains in your bottom; I get that a lot especially during periods. It’s really unpleasant as it even makes standing difficult!! Also, you mentioned pains outside of your period; I get that too and it’s actually far worse than during the bleeding!! Your not alone!!

Do consider the surgery as what your experiencing isn’t normal and needs investigation. Don’t allow any Drs to normalise your symptoms or make you feel like your not sick or exaggerating. Even if you have the lap and nothing is found, it is still helpful to know that you do or don’t have endo. Ruling it out will help you and the Drs as they can manage accordingly.

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Thank you so much! (: I do have fibromyalgia as well so I’m pretty used to being ignored by doctors and just told to take pain meds... which is why I don’t like going to the doctor. The doctor now though is very good and has been so helpful, it’s too bad though because I just met with her about this and she is moving out of province. She has recommended a new doctor that she says has the same style as her, so I’m hoping that she will be helpful and not dismiss me...

Thanks for your reply! Too bad your having issues with your bum as well! So painful :(

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Hi Sabrina52,

Everything you describe is exactly the same as me, so be reassured you are not alone. When I was diagnosed with endo I didn't believe them because my pain was so severe, and occurred daily in varying degrees, from bearable to passing out. I never had a single day where I didn't have any pelvic pain, rectal spasms and a whole host of other symptoms. My periods were so heavy I couldn't leave the house at all for 2-3days. At its worst I was unable to do a full weeks work, in a 6 month period. However, I am now completely free from all of this misery, and that is thanks to Zoladex! I know this wont suit everyone, but for me it has literally been a life saver. Within hours of the implant I was pain free. Zoladex, puts you into temporary clinical menopause, which means no more painful, heavy periods, no more pelvic pain etc. I have had no adverse symptoms on Zoladex, only pure blissful ones! As for being on the birth control pill Sabrina, I am not sure how effective this would be, Oestrogen makes Endo worse, as I have understood it, and for me I reacted adversely to Progesterone, with horrendous mood swings and rages. However, we are all different, but I would certainly look into Zoladex, after two surgeries, a mirena coil, and countless other pills and potions this is the only thing that I have found to work 100%. Good Luck.

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Thanks for replying! I'm only 20, but I've wanted to be a mom for as long as I can remember, so i'm nervous about taking birth control because I've heard of women having difficulty getting pregnant after. So the idea of going into like a temporary menopause makes me nervous... I will see how the birth control helps... hopefully it doesn't make it worst... Thanks for your ideas though! (i'll keep that in mind!) Hopefully I will be able to go for the laparoscopy, I just want to know whats going on in my body ya know!

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Oh dear, I'm not a specialist and it MUST be confirmed by e.g. laporascopy, but there is a big chance it is endometriosis. It all sounds similar to my story - for 10 years I was on contraception because of heavy and painful periods (I've heard it's just "my nature"). Horrible cramps out of nowhere were explained as caused by emotional distress. Painful intercourse for the last year as caused by problems in the relationship (even though I didn't have any). Pain while urinating, was caused either by delicate bladder or urine infection. Then finally I saw a different doctor, when contraception stopped masking the symptoms and I was in unbearable pain every period, who in October 2017 found 4 cm ovarian cyst. This July I had the operation and they confirmed stage 4 endometriosis. I have pain out of the blue, especially when I'm peeing, cause in my case bowels are fine but endo attacked really badly my bladder. One more thing - if I hear one more doctor saying heavy periods and clots are normal, I'm going to explode! For last months I'm taking Chinese herbs and accupuncture and my practitioner explained to me that according to Chinese medicine the only normal period is an easy, quick and smooth one, which doesn't cause too much trouble to a woman. As a result, even with stage 4 endometriosis, after months of working really hard to get this results, I just had the second easiest period in my life! 4 days (instead of 8-10), very little pain for just a half of the second day, no clots, not too heavy, with fresh red colour blood (not dark brown like always), what confirms a good and easy flow.

Dear, you must be properly diagnosed and if your doctor doesn't take the action they should, just change your doctor! Good luck!

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What Chinese medicine you take?

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Dear Bdgjdjd,

The nature of chinese medicine is very different to western medicine in that it is very unique to each individual's constitution and situation. If you take the wrong medicine/treatment for you (but could be right for another, even if you both have endometriosis), it can be very damaging.

If you are interested in this, please go see a professional.

RicEndoUK

Volunteer Moderator

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Hi! I fully agree with the previous reply, it really has to be designed for a particular person. I'm trying to promote Chinese medicine because I know there are so many women who are going through the same what I did - and in my case Ch.M. helped when "traditional" medicine failed. BUT it's not about ordering some herbs online - what you need to do is to find a good, certified practitioner (a good tip is someone who is open-minded about all sorts of things, like mine never questioned but rather encouraged me to go through the laporascopy), someone who looks closely and keep asking questions. In my case, every time I have a different set of herbs, chose accordingly e.g. to the phase of my cycle. My practitioner is brilliant, she looks at my body holistically, never dismisses even the slightest things, like some problems with nails what my gp ignored when I told him about, or when she added an extra session of accupuncture to relax me when I was going through a hard time emotionally speaking . It takes a lot of time and patience, but I see the results every day.

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Thanks for replying! I'm sorry it took so long for a diagnosis, but im glad that you have finally found some relief!. My doctor has been really good, this year once things had gotten bad, i put it off too long and didn't see her until after all of those hospital visits and a ruptured cyst. I only saw her last Monday, but as soon as I told her about the pain, the cyst, how long and heavy my period has been, and the bum pain and pain peeing, the first thing she suspected was endo. Unfortunately, she is moving out of province, but has recommend a new doctor to me she thinks that I will like... I hope that she is helpful. As someone with fibromyalgia, i'm so used to doctors dismissing my pain and health issues as stress or just constipation. I'm nervous that she will do the same... If she does, i'll be seeking another doctor of course!

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Yes i have endo and i suffer from pain out of period time

These pains called adhesions pain caused by scar tissues

Endo pain during period is caused by estrogen

Endometriosis pain not at period time is adhesions pains

Usually means stage 4 endometriosis it is very advanced stage

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Hi thanks for replying! Someone else on here had said that it seems pretty advanced, and i wouldn't argue that because i know the pain and symptoms i am experiencing. But I am so nervous, if i do end up getting the laparoscopy, they will find nothing and just send me home with some Tylenol. I haven't had the best experience with doctors (other that my current one). As they dismiss my symptoms, I find myself doing the same, like telling myself its probably nothing, but then again I know something is wrong...

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At least you have laproscopy and find nothing is better than find endometriosis

You should be so happy that you don’t have it

to be honest with you this disease is a terrible i even don’t hope my enemies have it

I would ignore endometriosis and I would think about something else if you don’t have painful period

But pain on both time for my experience this is very advanced stage

Btw pain doesn’t indicate the stage and severity Unless you have it out of period time

Try to find it before it affects your infertility because this is the worse for my experience

I can deal with the pain even i die everyday because of the pain but I couldn’t deal with my infertility

Everyone is different ❤️❤️

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Thanks so much, I hope that I find out what is causing this, even if it isnt endo ofcourse... So sorry you've had such a struggle! <3 <3 Thanks for your reply!

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After reading all these comments I feel like the way Drs speak to us makes us doubt ourselves! We start to wonder if the pain we are experiencing is even real!? Ladies, the pain is real! Everything you are experiencing is what I go through too....so, how can we all be making up such symptoms I.e pains in the bottom!? Who would make that up?? We all know our own bodies and so don’t allow Drs to make you feel like the symptoms are not real or that surgery is a waste of time. I decided that I’d like to go ahead with surgery as I’m certain of the endo diagnosis. However, if it’s clear then that’s reassuring for me but I still need treatment for the heavy bleeding and chronic pelvic pains!!

Take care ladies!!

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I know eh? It’s too bad! But you are right! Thanks for the encouragement!! (:

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For me lupron was the life saver

I really wanna take it again but it has very bad sides effects

But i think i will go to another round

I really love it

Omg I lived one year without pain which was impossible for me

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What symptoms were you having before taking the Lupron? Did your periods stop?

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I took lupron in order to get rid of my endometrioma that was the reason

I suffered from pressure in my pelvic area which caused having difficulties with peeing and pooping

When i say difficulties i mean it is too close to impossible to do the urination or pooping

(Sorry about this )

I was crying at the hospital that i feel my organs would fall from my body this when I discovered the cyst

When i have Period I always become disabled

No walking no sitting no standing I would look like animal

I was look like a Monster I always hurt my parents or anyone near to me i always loss my control when i got these pains

This was when i was 16 years old ( diagnosed) but I suffered from the first period my

My diagnosed took 5-6years

Period pains it seems like knife like needles that I cannot control them

On all of my pelvic area

But after lupron everything changed

I had one year without pains

Pain free

I don’t remember any side effects from it mabye i had but I didn’t feel because for me there is nothing to compare with endometriosis

Btw now every thing returned the cyst and the pains

I feel so happy that i lived at least one year in my life without struggling

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Glad you found a treatment that helped you! Hopefully you find another alternative with minimal or no side effects

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Hello, sorry to hear about all your symptoms and the experience so far with services. It took me a long time to get a diagnosis of endometriosis - for years I was made to feel like there was nothing and made to feel stupid for pushing for a laparoscopy but then they found so much damage that they’re still trying to figure out a way to fix it. You know your body and that amount of pain is not normal and you shouldn’t be told it is. I got a diagnosis of IBS again and again but actually it all ties in with endo - you should have a look at the symptoms on the endometriosis uk site if you haven’t already but bowel problems are common as are bladder.

I read your post but unfortunately didn’t have time to read the replies so sorry if anyone has suggested already but another thing that can happen is nerves becoming hypersensitive. On the outside of my stomach they tried touching it with a needle, the end of a pen and a feather - didn’t feel the first two in the majority and the last one hurt. Endo can affect a lot more than just your period and I definitely get symptoms out with my period which the specialist advised couldn’t happen. I was fitted with the mirena coil which is a recommended treatment for endometriosis, I can wait 6 months for a period but I build up to it for that length of time with various pains. I suppose the point of that again is that you know your body and you are getting these pains regardless of when they are.

I started a chronic pelvic pain management group which id never have gone to before, you eventually get so desperate but it’s good to hear others coping strategies. They also provided a tens machine which I can’t use on my stomach as it really hurts there but can use for my back, hips, sciatic nerve area and thighs as it feels as though my bones are going to snap during a flare up and can’t move. It doesn’t take it fully away but it has certainly helped a lot more than throwing tablets down my neck that don’t really help and it makes some movement easier.

Keep on at the doctors - unfortunately you’ll probably be doing it for quite some time but also look at what you can do to help yourself (if anything at all) - that’s the bit I missed for years. It can be little things like just allowing yourself time to lie and be comfortable and generally taking time for yourself. Maybe ask your gp for a referral to a pain clinic too to get more advice?

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