I’ve only just joined this site today and this is the first time I’ve been able to speak to others with endo. One of the things I struggle with and find difficult to explain to others is the pain, for me it is very sharp shooting/stabbing pains on my right side near my ovary, it normally only lasts a second or two but can sometimes make me drop to my knees or jump back as if I’ve been stabbed with a hot rod but then a second later I’m fine. I find it extremely embarrassing when it happens in front of people as it really does look like I’m being totally dramatic but I can’t help my reaction to the pain. I was just wondering what everyone else’s pain is like? Is it constant, shooting, cramping, all the time or only round ovulation.
I had first lap just over 2 years ago and 2nd one in February this year, both times was only pain free for 3-4 months after before pain started back. I totally understand that this is a chronic condition and can get pain from adhesions after surgery, was also wondering how others deal with the pain? As mine is intermittent I don’t see the point in taking pain killers because I don’t know when it’s going to happen and when it does it might not happen again for another week. Over the years I have tried BC, Tramadol, Naproxen, Diclofenac, over the counter painkillers and Zoladex (although only one month of this as hot flushes and mood swings were awful). I’d be grateful for anyone else’s experiences. x
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Barbara82
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I do think we all suffer differently as we all have different pain thresholds. I have constant pain in my pelvic area, back,hips, knees and ankles and it gets progressively worse as the day goes on. I also get terrible cramping pains and can only get relief from dropping on all fours in the doggy position! Not too good though when I'm at work because I can't drop to the floor in peoples houses! (i'm a housing related support worker). Since having my second lap in June I am in more pain than I was before my lap and my ovaries ache and get stabbing pains in them, I am also still very swollen and sore around my belly. I used to describe the pain as a tooth ache now it's just like a constant dragging down pain like I'm carrying a huge, heavy rucksack on my back. I'm on more painkillers now than I was before my lap in June and I hate it. I have now been referred to chronic pelvic pain clinic to see if and how they can help me.
People around do not understand what the pain is like we are suffering and as I always get told, 'but you look okay, or you were fine 10 mins ago how can it just come on like that and be that bad?'. Without sounding awful I do wish I could give endo to someone for a day so they know what it is like for us to live and survive with this nasty disease.
I would describe it as my shadow who follows me round where ever I go!
Oh Bonygirl1 you sound like you have it bad, I guess I am lucky in the respect that mine is sporadic shooting pains near my ovaries and not going anywhere else. I feel so bad for you I can only imagine the pain and stress you are going through I know how bad I feel and how down it can get me. I have noticed recently that my stomach is a lot rounder and I thought I was putting on weight but don't see any change in the scales so maybe I have the swelling too. I have just bought a fitness dvd and I am going to be trying that 2-3 times a week as although exercise can make it worse I think in the long run it will reduce the pain (so I've read anyway).
I know what you mean about giving someone the pain for a day, it's not horrible it's just so people can understand what we go through and that we are not over exaggerating. I have described it to my friend as having a black cloud over me and not knowing when it's going to pour, as recently it's been getting me down but finding chatting to people and reading other posts on here has definitely helped.
Hope you are able to find some help to relieve your symptoms soon. Take care. x
Thanks Barbara82, I have had a session of hypnotherapy to help with the pain but as of yet haven't noticed the pain reducing but I am able to relax more when I use the tapping technique. I've also got an appointment for holistic therapy in a couple of weeks so hopefully I can get off all these pain killers again. I used to be able to manage my pain, think it's to with years of suffering, but since June the pain is much worse.
Any way good luck with your fitness dvd and remember to only do what you can manage and what your body can take. I spoke to my gym instructor about endo symptoms, they advised me on what classes to do and what sort of exercise to avoid. I tend to stick to low impact, swimming, yoga, weights to strengthen my muscles (not heavy ones tho, I'm a wimp). I have also just started to cut out wheat and dairy, not really seen massive improvement but it's early days.
On and I love talking I drive my husband and sons mad, they are so relieved I am now on here most of the time, so they can have peace and quiet!
Lol, I also do the tap technique I thought I was the only one that did that. I'm also able to kind of manage mine when I relax, it's like when you get a headache if you start crying or getting bent out of shape it's just gonna make it worse as if you sit there and relax it starts to fade away.
Hi. My pain is much like bonygirl1"s. I have a constant ache in my pelvic area. Lower back hips and groin. It feel like my pubic bone is bruised. My pain gets worse through the day. and then is unbearable through the night. I sympathise with you both. The pain is terrible. Newly diagnosed and have not tried any treatment apart from pain relief. I ve tried reflexology not sure it help. Best wishes ladies.
Hi, I actually also sometimes feel like I have a bruised pubic bone but didn't realise that it was relating to my endo, wasn't sure what was causing it but now it makes sense.
Law27_pop, I think the tapping technique is relating to EFT (Emotional Freedom Technique) I have heard of it before but not sure how it works.
It's so ridiculous the pain we are all going through you would think by now they would have developed an effective way to manage the pain.
My pain is also constant pelvic pain during my periods but with sharp pain at some time as if I was punched in my uterus. I react a lot to temperature. Cold weather or air conditioning will make it acute. I also have spasm sometimes which can create nausea. My tummy is generally swollen before and during my periods.
I am taking Ponstan (Mefenamic Acid) since I am 14 for the pain. I was discovered with endo at 26. After having tried different pills to manage it, I have had my first lap at 27 and helped relieving the pain before the periods and alleviate the pain during. I think taking a pain killer helps and this one helps as well if you are bleeding heavily. A good thing to know is that pain killers and particularly this one will be efficient only if you take it before the pain: my doctor told me to take it before the pain gets too acute or during my first day of the periods for better results.
I am the same as you only i am 16. I was diagnosed at 15 and was put on the pill and the rod. I have pain every day and most of the time i fall to the ground in pain or feel like someone has stabbed me. I also get shooting pains. My stomach is always swallon even when not on my period. I get my period for up to three weeks at a time the longest i have had it was 4 months it was the most exhausting thing i have ever been through. My hips and ankles are always aching and my back is always stiff and sore no matter what i do. Pain killers dont work for me and if they do it takes about an hour to kick in and then i only get relief for 5 minutes. I used to take four at a time just to get ten minutes out of it. I know how you feel ladies its absolutely awful. I feel for you all xx
The only way I can describe my pain to people is like being stabbed in my overies. On two occasions I've passed out which is embarrassing and become short of breath and clammy. I get severe back ache and bloated stomach just before the Pain kicks in. Any sort of movement makes the pain 10x worse usually lasting about 2 days.
I have mild pain most of the time, but the first 2 days of my period are agony. The pains come and go but make me feel faint and clammy. I've birthed 5 babies including twins with just a bit of gas and air, so I'm no wuss, but I would say endo pains are on a par if not worse than childbirth X
Sorry for the delay in responses, lenaducce I also was on mefanamic acid when I was about 14 thinking about it now that's probably when my pain started but didn't connect the 2, my periods are very light and only last 3-4 days so it's not that they are heavy it's just the sporadic shooting pains that I find hard to manage.
Carrieanne04 - when I had my first lap the nurse who cared for me also suffered and she told me she often passed out with the pain. When I used to go to the gym I found that running on the treadmill really aggrevated the pain and gave me a very heavy dull ache in my groin so it stopped me using it. I now excercise at home.
Squiddles - I often feel very light headed and also since my first lap I also feel extremely nauseous but not because of the pain I think it's just from having my period although I only started feeling like this after my first lap, not sure if it's connected or not but having my 1st lap at 29 and not having this symptom before I can't see how there is not a link.
Hi SamA14 I think I was about 14 I had really bad heavy cramps and pains I also remember going into hospital around 16 as was getting really sharp pains in my side but they did know what it was. I then went on the mini pill for about 10 years so very rarely got a period. I came off it around 26 and then the pain got really bad. I kept going back to the doctor and researched all my symptoms online and realised that it must endo so I printed everything off t take to my doc then they agreed to do my 1st lap which had to remove a cyst and endo. 2nd lap exactly 2 years after the 1st (which was last feb 2013)
I ladies, mine radiants everywhere, leg pelvis belly, shoulders legs back just everywhere. I describe it as appendices that never happens, and ovulation pain Is horrendous it feels like hot pokers just randomly being shoved up there and moved around. And also a heavy sensation. The leg pain feels like restless legs. My legs feel so heavy some days I walk slower then my two year old!! I'm on pain killers bit only take them if I cant cope. Heat pack helps alittle. My causes nausea and head aches. My breasts during ovulation swell two cup sizes and if I take my bra off I swear they feel like glass and they will shatter, all the joys of having Endo happy days 😞 x
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