Hi everyone hope you are having pain free days. I have been suffering with constant pain every single day for the past year and have received little help and guidence from doctors, so I was wondering if you guys would be able to help me.
The pain started almost a year ago in November 2014, and came out of nowhere, it felt like period pain but it continued on after my period and never left. since then I have experienced every type of pain sensation under the sun; aching, burning, hot, stabbing etc. The pain always changes and I really cannot notice a pattern to it. I do also get lower leg pain on my calfs and back pain when my pelvic pain flares up and gets really bad.
I had general blood tests, urine tests, MRi scans and ultrasounds and they all came back normal. I've also had numerous STI checkups too, always negative. I then went to a foreign country where i managed to have a laparoscopy in April 2015. All they found were ADHESIONS, on my right side, attached to my right ovary/ uterous to the wall of the abdomen. This was strange to me because the pain is pretty even across the whole of my pelvic area - i cant say one side is more painful than the other.
No endometriosis or anything was found. They also said they found some very small cysts on my left ovary, but these were 'normal' for the time of my cycle, and when burst only had blood inside. I did notice that i do occasionally get stabbing pains on my left side but no adhesions found there.??
The doctors did not know how or what caused the adhesions but they removed them and my pain was much much better for about 3 weeks. We're talking from a daily 7-8/10 pain to a 1 or 2/10 on the scale.
after the operation I also suffered from a UTI due to the catheter that was used, and because this was not spotted in a test it was left untreated for about a month or so until i became very ill with fever etc. I took 2 rounds of 2 different antibiotics, but to this day, every time i go to wee it hurts, but urine tests come back clear.
Anyway I would say that now the pain is basically equal to that before the operation. the only pattern i can notice in regards to what worsens the pain is when SITTING UPRIGHT the pain becomes unbearable, (his was always the case, not just after the op) although the pain is constantly there it just becomes horrendous when sitting up. The pain does NOT get worse on my period, and my periods are fairly regular and not heavy. I did not have any previous ops before the lap or any other abdominal infections I am aware of. other than this pain I am completely healthy.
I am only 20 years old and about to start my second year of uni. the first was incredibly hard because of my pain and now I am so scared to face another year of pain. I have become very very depressed because of this, even my family and friends are sick of me being in constant pain. All doctors can say is "i dont know" in regards to my issue and if they cant help me what can I do?
Does anyone know what could be causing this? I am so scared this will last forever and I am finding it so hard to cope. I really hope someone out there can help me!
Thank you so much for your attention and sorry for the long post. Hopefully will hear from you guys soon! Wish you all the best on your pain relief journeys xxx
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njgirl20
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So sorry for you especially so young and trying to study. Has anyone considered whether it could be a trapped nerve in your back? Have you had any back issues? Are you on any regular pain killers? If so, do they help?
Hey thanks for your reply! No that hasnt been considered I guess its because they found adhesions on my pelvic organs. Would a nerve in my back cause adhesions? And i have tried some regular pain killers - a few different ones for a bout a week but they dont rly help sometimes even make it worse
Hi, no trapped nerve can't cause adhesions. It's a completely different thing and was just a suggestion if no other cause found as it could produce similar pain to yours but now I've read the reply from stessman, that sounds a more likely cause so definitely try a different doctor. Have you seen gynaecologists or were you under general surgeons? You need to see a consultant gynaecologist for further test for endometriosis. What pain killers have you tried? Prescribed from Dr or shop bought ones? Take care.
Hi - I know they say they didn't find endometriosis but if you had adhesions and you had blood filled cysts and the pain you're describing, it really sounds like endo. It can be almost microscopic and for some women there may be only a little endo tissue but cause a great amount of pain. Maybe they missed something. But besides that it probably would be a good idea to see a pelvic floor physical therapist and have them assess you to see if it's something bio-mechanical that is going on. It could be trigger points, nerves being pressed on, etc. If you want to contact me and let me know where you live, I could get some names of well qualified p.t.'s for you. Have you tried any nutritional changes yet such as removing dairy or gluten? There are some women for whom even making that change can cause a huge shift in pain levels.
Hi thankyou so much for your response! I really jus dont think it would be endo since no one in my family has ever had it, all my aunts and grandmas and female cousins etc have not had any problems in regards to that area and are highly fertile! Plus i dont get extra pain in my period and my periods arent heavy. Infact before the op when i started my period the pain would kind of lessen as if it was some sort of pressure release or something i dunno.
Also would endo cause worse pain when sitting?
i saw a physio in a pelvic pain clinic in oxford the john radcliffe one and like she pressed down on my back and stuff but it didnt really affect the pain So she jus reffered me back to a gyno but i have to wait over 6 momths from now for an appointment from her 😞 last time i saw her she jus gave me some sort of psychoanalysis instead of helping with my physicsl problem so not even looking forward to that
I'm the only one in my family that has had endo - it can happen, there can be other factors than just genetics that can trigger it, even problems like candida overgrowth, gut problems, toxic exposures all can factor in. But that aside, did your pelvic floor physical therapist do an internal assessment at all? Kind of hard to assess what's going on with your pelvic floor if she was only examining you externally I'd say! If that's the area you live in, I can ask my contacts and see if they have any other good referrals. If it hurts more when you're in certain positions like sitting, that could be because certain nerves are being pulled on internally, muscles are really tight etc., which is why a p.t. would need to do an internal assessment. There's nothing wrong with getting second opinions, or even thirds if you're not getting answers or making forward progress. I had to go through that and it was worth the effort, so don't give up. The right practitioner will figure it out. How is your anxiety level, do you find you are stressed out a lot? That can definitely cause increased feelings of pain. Try and spend some time every day just breathing into your belly slowly and deeply and quieting down when you're feeling overwhelmed. Also, have you tried castor oil packs yet? They might be really helpful for the pain, and certainly are safe and easy to use.
Hey no the physical therapist i saw did not do an internal exam which i also found strange too. And yes please if you could let me know any good pts around north london or just anywhere in london really that would be great i would really appreciate that. Yes my anxiety and stress levels have been quite high as i keep gettig frustrated that i cant study properly because of this pain and just feel like i cant fulfil my potential. And also because of all the letdowns ive had from doctors is just making me feel like this problem is impossible to solve. Im also scared whatevers wrong could be affecting my fertility.
No i havent tried caster oil packs i dont know what that is! But i really really appreciate all your advice thank you so much all the best to you xx
She works with the whole person - nutrition, p.t., stress management, and referrals to other specialists, so she should definitely be able to help you. She will know about castor oil packs I'm pretty sure! It's soaking a wool flannel piece big enough to cover your lower abdomen in organic castor oil, putting that on your tummy, put a plastic bag over that to protect it and then a hot water bottle or hot pack over the bag so the heat is pushing the castor oil into your system. 30-60 minutes a few times a week, except for when you're having your period. Some health food stores will sell all the pieces together in a castor oil pack "kit" which will have instructions with it. You can wear an old top when going to bed and leave the oil residue on until morning, then shower it off. Or clean it off when you are done. It's a good time when the pack is on to do some deep breathing, and relax. They are very effective for all kinds of pelvic pain. Give it a try while you're waiting for your next appointments. Try not to worry too much, you are young and your body has a great capacity to heal itself, given the right support : )
That sounds horrible!! I am sorry you have to deal with this every day. It is so hard to have pain all day and try to deal with daily life. I only had one spot of endo, but i have been in constant pain for a year. I started now to do regular yoga exercises every day at home and i followed a course CBT to help with my worries and thought process. I dont know if this would help you, because of the amount of pain, but it can be an idea.
I wish you all the best, go back to GP or get a second opinion somewhere else.
Hi thanks for your reply! What sort of excersises did u find helped? Because everytime i try to do excersise i feel like it just really aggrevates it even worse. Also did the endo run in your family?
First i went to physio and he gave me some exercises for my legs and then i started to follow yoga international to help me with some ideas for exercises. I do stretches for the legs, lounges, press ups(gentle), breathing exercises. I do these for 15 minutes a day and try to go outside for a walk. Some exercises can aggrevate my pain, and if i have a bad day i avoid those. I think my inactivity, eating not very healthy and worried all the time made me feel much worse, but of course everyone is different.
My mum had ovarian cancer and has everything removed now. My grandmother had surgery at tummy area, but not sure why. I just found out by chance that i had endo with keyhole surgery to have large cyst removed.
So sorry to hear about your pain. I too have been having very similar problems but am a lot older than you! Are you in the UK? I have been going to a very good pelvic pain physio practices in Eastleigh near Southampton. That has helped. Good luck and I do hope you find relief soon.
hi thanks for your response! Sorry to hear about your pain too. Yes i am in the UK But i live in north london - southhampton is incredibly far would you happen to know any area this area?
I'm afraid I don't know anyone on your area but you could look at website pelvic physiotherapy.com/list-of-therapists/ You might find someone in your area. Lots of luck. I do know that many people travel long distances to your physio but of course she is private.
Hi I've been seeing her for just over a year after having pain for over 2 years and she has definitely helped me. I feel so much better. I do hope you manage to see her and get some relief from your pain. Lots of luck.
Sorry to hear you are suffering in so much pain - you have come to a good place though as so many of us are dealing with constant chronic pain and there is a lot of advice aswell as different ideas out there. You are doing really well to keep studying at Uni while going through this, maybe try some alternative therapies (expensive - I know) they are often quite good at helping cope with chronic pain. Perhaps a good chiropractor? Acupuncture may also help, aswell as yoga or pilates if you are able to do these with the pain. It may help with the stress and depression bought on by the pain if nothing else.
With regards to the pain on urinating, try and get a a referral to a specialist uro-gynaecology department. I ended up with severe 'catheter trauma' and also have had problems on and off with urinating/frequent UTIs since the catheter. I had it in for a month and following a bodged TWOC had a lot of problems. I still can't tolerate a catheter being put in for various tests they've done (flew off the examining bed!) as there is severe pain from scar tissue I think. They don't seem to be giving me any answers as to where to go with this so do keep us posted if you get any! At least a referral to right people will diagnose what is giving you the UTis and pain.
Hope you are able to get some answers soon, maybe look into further investigations for endo aswell. Stay strong and try and give yourself as much of a break as possible. Also maybe speak to your Uni counsellor? for advice with regards to extentions on deadlines etc if you haven't already.
Hi thank you so much for your response! Sorry to hear about your catheter issue! I know how terrible that can be. My UTI and pain only started after the cathetre so its probably a cathetre trauma like you said. I cant even bring myself to go back to my GP theyve already reffered me to like 10 places who just refer me Back to the GP after not finding anything on a scan.
I am so sorry you are in so much pain. I believe many of us can relate to this chronic pain frustration!
I agree with getting checked out with a pelvic floor physical therapist. I found mine through my urologist. Maybe trigger point injections could help as well. I have a lot of pain with sitting -- as well as pelvic, abdominal, back and leg pain, and was diagnosed with pelvic floor myalgia. I need to get Botox in my pelvic floor to help ease my issues, along with physical therapy, yoga and acupuncture.
Best of luck, hope you can find some level of relief soon!
Hey thanks for your reply! Yes i think i will try to see if i can find a pelvic floor physio therapist since i do get extra pain when sitting. Do you know any good ones in or around london?
In London there is Helen Keeble, Maria Eliot ,Lucia Berry and many more I went to a talk given by Lucia Berry and was very impressed I am going to make an appointment to see her .....I have seen Ruth Lovegrove Jones and Maria.
I would check for endo again with a different specialist. Different stages and different scans could continue to help rule things out. Try not to think about dna. It could be a pinched nerve or trigger points which can be extremely painful (acupuncture on your back could help if back related)
Pelvic physio is different in a hospital setting than in a private practice. A doctors/hospital practice usually gives very little time and not the most thorough perspective.
I'm in America but the right pelvic pt is out there for you. Pain also spreads. Learning to relax the interior muscles where they teach you to do it for yourself could help you bring down the pain. This kind of control may help your depression while you get to the bottom of the cause.
Have you tried sitting in a hot tub or gentle, non kicking swimming. Water relaxes the body. Can give a break. Highly recommended.
Yoga was my coping when I had no answers. It got me through the scariest time.
The answer is out there. Tell yourself this is a temporary situation hypnotically to guide your brain. You will find the cause it takes tremendous patience and courage. School is hard but best for your brain. Keep searching you will find it.
Try a tens unit for break from the pain. You need to find the cause. Pain meds, like gabapentin can help lower the pain some in the mean time but you must go up slowly and the side effects can be a bit challenging while you are going up.
Your gp is not the right doc for this.
You will find the right pt just keep interviewing them and trying to get referrals close to you.
Wow thank you so much for that really conforting support. Its nice to hear someone telling me that I will get to the bottom of this. I have just become
So tired of it all i have literally lost count of the amount of doctors Ive seen and fear dissapointment when seeing new ones. I am currently waiting for another ultrasound with a new gynae and then she wants to try giving me the pill to stop my period see if it might be endo.
The physiotherapists often know more than the doctors. They may suggest exercises and possible diet changes as well as finding out what is possibly out of joint with the pelvic floor. I had one session in London but have since been having PT in Germany where I live.
Hey thank you for your advice, I jus took a look through her website and she sounds quite promising. I am considering following her up! Do you have any idea what her fees are like?
I had a first appointment in July 2013. A first appt of an hour cost £130 then. Follow-up appts cost £70 for 30 mins or £100 for 45 mins. But these may have gone up in the meantime.
Have you checked for hunners ulcers on bladder? Your pain sounds very similar to me. But I guess we all have some sort of pelvic pain. There was another person who mentioned Botox injections to the pelvic floor, that's what I get and that helps me a lot. I also get nerve blocks, take Percocet all day, lyrica, hot baths, heat pad all night on belly-be sure to buy one that has an automatic shut off. Don't give up! I also agree with another reader that mentioned exercising and short walks do it you can do on days that you were in a lot of pain even if it's just a very small stretch but do something each day, it hard to do I know. Be very gentle with yourself to avoid flareups. Even on days where you might feel a little better still be gentle because you can still get a flareup. I also eat gluten-free, dairy free, sugar-free and that helps as well. I'm in the US so cannot recommend any doctors but I also agree a physical therapist is very helpful as well as a good urologist and a good pain doctor and Uro gynecologist. Hang in there, stay strong, don't give up. 😊 best of luck to you
I am very familiar with your situation. I had a very bad STI whilst in Europe last year and was very sick for the rest of my trip. I went in and out of hospital and nothing made it better.
I took all the anti biotics under the sun but it did not help. The doctor's told me i have nerve pain in my abdomen, groin, anus etc... anything to do with the pudendal nerve.
Is this similar to what you are experiencing?
I became very depressed and tried to kill myself. I am on Anti Depressants now and feel so much better!
Make sure you are doing exersize despite the pain. I underwent surgery although this did not help.
I recommend trying all conservative therapies, meditation, stretching, every morning consistently. Because you have been in pain for so long your neuropathways have adjusted to this pain cycle, causing your pain to be linked to everything you do.
YOU CAN CHANGE THIS CYCLE and help yourself be in much less pain. I am proof of this. When you are so depressed you must use action's to get yourself out of it, you can't "think your way out" as some people recommend.
Your friends and family may be getting annoyed but they are not in your situation, they do not understand the pain you are going through. Also try to not look at too much information online as this also made me very depressed, everyone's body is different in the end.....
If you have chronic pain the only way to lessen the pain is to accept it, and thus it will reduce as you are not always thinking 'will this pain go away etc'
The PAIN WILL GO. AND it will reduce, you just have to change how your brain perceives the pain.
It is proven that our brains our neuroplastic, and can change, so begin doing things that will have a positive impact on your pain. Keep active, see friends, and most of all try to catch the negative thought patterns when they occur.
Another way to reduce pain, is to understand exactly what is happening in your body, and then this process becomes less foreign, you begin not to hate what is happening yet see it from another angle.
If you feel you have seen every medical specialist then i suggest stopping the doctors. Half of my depression was from constantly seeing doctor's with no results....... setting myself up for failure.
Only you can take your health in your own hands. Eat properly, run, go for a walk, try to be in the moment.
I wish you all the best, and remember many people are on the same journey as you and some are thriving despite the pain!
Wow thank you so much for sharing your experience. I am sorry to hear you went through such a terrible time but glad to hear that you are feeling better now. Hope you make a full recovery! And thankyou for your supportive words it really helps alot.
i know they cant understanc and i have come to accept this and stopped being so angry with them. I agree with you i think the mistake im making is not doing anything to help myself like excersise etc but only relying on the help of others.
as for the depression caused by doctors i completely understand - after seeing a doctor ide be so upset with their lack of support and sympathy never mind their lack of help it would literally take me a week or more to recover ide spend everyday crying!
I do feel more positive now though so I am going to try to use this to maybe do some excersises and things for myself!
Regards your bladder , I more than likely do think you have an embedded infection that normal NHS testing does not pick up....there is a professor at the Whittington in London, I suggest you see him privately for first appointment £200.00 ( beg, steal, borrow the money well not steal but you no the saying ) and then if he says he can help you transfer to his NHS list.
You will be surprised how the route of a lot of pelvic pain is the bladder.
Thanks for that advice ill definately need to look into it ! Xx
I'm wondering if you got more adhesions after the surgery for your adhesions. I'm so sorry to read about what you are going through. I wish I could help; all I can say is keep looking until you get a GOOD, DEVOTED doctor. In the US this is very hard to do; they have like 15 minutes and don't care if they resolve the problem. When I was younger I had chronic pain that would flare up at the end of my period, and also when I was constipated. The docs all said it did not sound like endometriosis, but finally I got one that said it DID, and she did the surgery and sure enough, that's what I had/have. It grows back but has never been as bad as before the first surgery. I hope you find someone that can help and that you feel better
Hey yeah this is what i think too that probaby the adhesions have grown back as I know thats highly likely.
im just really curious and feel like i need to know what caused them in the first place and i have no clue. The pain literally came out of nowhere. And the constant blood tests etc ive had have shown no infections and have not had any previous surgeries before my lap so its very very strange. 😞
I'm not a doc, so I don't know what caused your adhesions in the first place either. Did you have abdominal surgery before they happened? Sometimes endometriosis spots (the kind I have) can be microscopic and it takes a while for them to be visible. Did you have a C-section? I wonder if you have more adhesions. I hope you feel better
Definitely recommend seeing my physio - have been seeing her for a year now , this time last year I was unable to sit due to the pain my day's consisted of lying on the sofa in excruciating pain , i thought my life had ended . A year on i have pain free days , I'm able to sit , have a life 😀 , every day I stretch , exercise , massage tight spots externally and internally. She has a wealth of information , she's been my saviour. Take care .
I know this post is older, I hope you still check this! When I read your post, I felt like I was reading my story! That's exactly what I'm going through. Same type of symptoms, they thought it was endo, did a laparoscopy, found adhesions, scraped them, didn't find endo, and I'm still in so much pain. I keep getting sent back to GP and have temporarily given up. I feel defeated; what can you do when every doctor tells you there's nothing wrong? It's a nightmare and is ruining my quality of life! Have you been to the doctor or found out what's going on yet?! Please update, I'd love to hear. I hope you're doing better.
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