Hi I’m new to the pelvic pain support group, please bare with me as probably a long post. I will try to bullet point my history to make easier reading!
- Pelvic Pain, horrendous periods, other symptoms including bowel problems all from 2009 (although always had horrendous periods)
- messed around by various docs, told i had a bad back etc, even told Pain was psychological from 2009-2013, I begged to see gynaecology where I was finally helped and diagnosed with severe stage 4 Endometriosis and frozen pelvis (all organs within pelvis stuck together)
- May 2014 big op to remove all Endometriosis was successful and after recovery I had 6 months of being pain free and having my life back.
- Dec 2014 I fell pregnant and in pregnancy bits of pain started to return and since giving birth in Aug 2015 the Pelvic pain has returned and got worse over time.
- March 2017 sent to a different hospital to mine to have a laparoscopy to remove any adhesions or endo if it’d grown back. This hospital did nothing. Left me me with adhesions sticking both ovaries to the pelvic wall.
- Obviously still in pain so I paid privately to see a gynaecologist who I know is good back in my area. He couldn’t believe they didn’t even try to free up my ovaries in the op. As my pain is right sided he said he’d do an op (back on NHS) to remove adhesions and remove right ovary and tube as so stuck down.
- Nov 2017 have op to remove adhesions, right ovary and tube. All went well. Surgeon said after he’d hope my pain would improve but if it doesn’t it means that it probably wasn’t the stuck ovary causing all the pain. He can’t really do much more as just works in gynae and he was happy no Endometriosis found currently.
- fast forward to now and recovery side of things was hard but ok and I no longer have the stabbing pain in the ovary and tugging and pulling sensation I used to get. However the pain in the right side at the back of my pelvis is there still, never went and at times can be worse than ever. So it seems the pain and problems from the ovary were just small in comparison to this.
I’m totally deflated and the pain is so debilitating. I have a 8 and 2 year old and normally work 3 days a week although currently still signed off work since the op.
- Yesterday I went to pain management I had quite high hopes as I saw this guy in September and he talked about an MRI for my pelvis and possible injections. I’d had a MRI on my back before but my back is fine, no sciatica.
So I see this guy and he says my pelvic MRI got rejected because they didn’t deem it necessary as all looks fine down to the sacral region on my back MRI. He also now doesn’t see the point in injections. He said that I had one before and it didn’t work. I explained that was 8 years ago I had that when nobody knew I was pickled in Endometriosis so back then I was in pain with that! He also said an injection if works may only give 6 weeks to 3 months free of pain. I’d be happy to have a week free! But he basically said I was too young (I’m 34). He said if you were 87 I’d give it a go. What the f**k??!
He’s been basically not willing to do any more investigation (e.g scans) or look closer at nerves. I cried for ages telling him how it’s effecting my life. He thinks I need to learn how to manage my pain! (I’ve managed long enough now!) so I’m going on a 7 week pain management course where I have physio and see a psychologist!! Do they think it’s all in my head? I could scream. He’s also increased my meds.
Currently on Gabapentin 900mg got to slowly increase over next few weeks to 1800mg 😱
I’m on 10mg amitryptiline and take 30/500mg of co-codamol up to 4 times a day.
He’s also writing to my dr about another drug to try if increase of gabapentin doesn’t work.
Because I was going round in circles with him and didn’t really want to leave without asking a million questions he said he’ll discuss my case in a meeting in 2 weeks with other pain consultants and write to me if anything comes of it. I don’t feel overly hopeful.
He made a comment that I’d had 4 ops and none had worked. I nearly screamed. As mentioned above my big op in 2014 did work and as you can see from my explanation of my ops they’ve not just been done for no reason!!
So my pain is basically right sided in back of my pelvis, it can radiate into the bum, hip, front of pelvis, down the leg and in to the foot. I wake up with it but it can flare worse from too much sitting, walking, standing. Basically anything can make it worse and it’s daily!! I also have bladder problems since my big op in 2014. I can see but have to kind of lean forward and use tummy muscles to push my wee out. I don’t empty properly so do know how to self catheterise if I need too. I suffer with UTIs quite often and along with other symptoms do wonder if I have intistitual cystitis but not sure at the min.
I feel like they don’t know what’s wrong now so will leave me suffering. He mentioned I could have the tiniest bit of endo or scar tissue somewhere causing extreme pain which might not have been seen in my op as so small. When I questioned that later in the appointment and asked if we could find out out if that’s the case he back tracked and said he didn’t think it was!!
So sorry for long post. Any help or advice totally welcome.xxx
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Cat247
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Hi, I did see urology back along but they just did flow tests and urodynamics as wanted to see why I wasn’t emptying properly. They decided the surgery had caused me to have a lazy bladder so set me up with catheters to use when needed.
When I had the op in March last year where they didn’t actually do anything they carried out a cystoscopy and apparently I had mild inflammation within the bladder. Nobody has ever explained that to me. Last time I had an infection (Dec) my GP did say if keeps happening may have to go back to urology. I have been known to have UTI symptoms but nothing grows on the culture which again is a sign of IC.
I’ve heard it can cause pelvic pain but I wasn’t sure if it’d be in such a specific area of my pelvis and radiate to the hip, leg etc...
I get severe pelvic, back and hip pain along with bad uti's which sometime show infection but sometimes don't. I'm currently seeing my 3rd urologist for kidney stones but he wasn't really bothered about the pain and infections. I am thinking it might be IC and GP agrees so I'm going to pin down the urologist on my next appt !
I'm rather afraid those of us who suffer with this undiagnosed pain are never going to find the cause or the cure, docs don't realise the impact it has on life.
Thank you for the first time in a few years I feel scared again. It was always blamed on the Endometriosis before so now it’s not that what is it?
I’m thinking of persuing the IC with my GP, so I’ll see how I go. I’ll do this pain management thing they want me to do even if it’s just to prove I am genuinely in pain!!
Best of luck to you aswell, is love to hear how you get on with your urologist when you go.x
I feel your pain. After a laparoscopic hysterectomy in 2015, an adhesion removal & appendectomy in 2017, I have been in pain for 846 days! I recently moved to Florida from Boston. I have had every test imaginable in Boston. Got a doctor down here who sent me to pain management. The doctor tells me I have Pudendal Neuralgia. It is located in the Pelvis & I have chronic pain in my back, buttocks & stomach. I’m waiting for a hypo gastric nerve block to see if it relieves my chronic pain. I forget how it feels to be pain free. Your symptoms sound similar to mine. Ask your doctor about it. Hopefully this helps. You are not alone!! XO
Oh bless you, it’s awful isn’t it. I know how you feel. I’ve had pain and problems for 8 years now!
Funnily enough I actually thought I may have pudendal nerve entrapment but when I mentioned it to the pain doc he dismissed it.
The annoying thing is he said to me if you had nerve pain it would radiate down your leg. I was like it does and I’d told him that in September too. He just looked at me like I made it up there and then.
I’m going to look to see someone else but I think I will go on this pain management course as I’ll do anything to help myself.
Best of luck with your nerve block. Can I ask did they see your pudendal nerve entrapment on a scan? Or are they just going by symptoms?xx
They are going by my symptoms. Can’t sit or stand too long...basically lie down a lot...only thing that gives me some relief. The pain is in my lower back. It’s in my right side in the front also. My buttocks feels like someone is grabbing it constantly. Same thing in the abdomen. It does go down into my right groin a lot. You should show the doctor this reply. I do think they think we are imagining this. I feel bad that you’re in this pain for so long. Especially with children! Something has got to give!! They tell me that there isn’t a test where they can see the damaged nerve. I’m so glad I found this doctor at Florida Pain Management! The waiting is unbearable. Idk when I’ll be seeing him for the procedure yet but i’m dying!! I don’t mind giving you my phone number on here...617-416-0219. Just give me a heads up that you’re calling me because I don’t answer if I don’t know the number. Even if you just give the area code. It definitely helps talking with someone who knows that the suffering is real! XO
Thank you that’s really sweet of you. Your symptoms are exactly like mine. My pain goes in the same places and is right sided. It can also travel down the leg to the foot.
He says he won’t give me an MRI on my pelvis as the one on my back looks fine. I asked about if you can see the pudendal nerve on the scan of my back and he said yes it’s not trapped. But like you say it won’t show if it’s damaged. I also know that if there is a tiny adhesion or bit of Endometriosis on the nerve they wouldn’t of seen that on a back scan!!
So frustrating. I think I give up with that Dr. I will be speaking to my GP to help find someone more specialised.
I’m in the UK so maybe bit pricey to call you but I’m on Facebook messenger if you want to keep in touch. Should find me ok on there. My full name is cathryn northfield.xx
Have u ever seen a womens health physio( ie pelvic floor)?
As i was in so much pain with all the laps and ops my pelvic floor muscles had got so tight i was in constant pain....
I couldnt have sex ... weeing and pooing hurt.
I see a amazing pf physio who has worked it all out and relaxed it and all the pain in back and hip and bum has more or less
Gone. I even have triggr points to press when on period and it works.... so mayb u could do with some just to relax u internally..... it amazing how much stress us women hold in there especailly when we have gynae probs
It so hard to find a pf physio, i found my own my gp didnt even know they exist???
So i pay privately, hopefully ur luckier and ur gp knows one but from what i gather there not many of them about.
Mine is training midwifes at mo to learn how to deal with stretching the pf through child birth as there proof it can stop tearing or prolapse if u do this through pregnancy.
I get alot of muscular pain in hip, thigh, groin, pf.... i also have endo and had alot of stress this year that eventually took its toll VAGINA WISE LOL... i couldnt have sex it was like i just healed up it was awful.
It was the pf muscle had just gone into spasm and tightened and would not release. I saw her and within two appointments she had released it..
No sorry not a miracle worker but it defo feels alot easier when ur relaxed down there!
I supose it no different then having a bad back lol. Just a weirder place and unfortunately it one of the biggest muscles in our body and it keep all our bits in place ie our bladder, womb, uterus.... so if it is out of sink it effects all ur body
I go to a doctor here in Australia and get a steroid type of injection into either side of the coccyx. It helps for about 3 months before the pain comes back full blast. Worth a try if you can find a dr who can do it.
Hi, I did ask the pain doc about injections but he said I’m too young. I know that’s a load of crap as I had one years ago. The only reason it didn’t work then was because I was absolutely covered in Endometriosis. Now I believe it’s nerve issues from all the Endometriosis and surgeries I’ve had but he’s not listening. Thinks I just need to learn to manage my pain! I’ve been managing pain for 8 years. I need to see someone else really, it’s just knowing who. Will be speaking with my GP. Thanks for your reply.xx
Yeah I’ve been asked to attend a so called pain management course as well. It’s not going to change our pain levels so much but rather help us cope better.
Surgeries are tricky because they can sometimes help but also cause increased central sensitisation in the nervous system each time they don’t work.
So you always have to do your research. If I knew better I wouldn’t have had half the unsuccessful procedures I’ve had. Botox injections into the pelvic floor would be about the worst one I’ve had I reckon.
I’ve been in pain a long time too. I’ve had plenty of MRIs of my spine which fail to explain my pain also.
It’s all about pacing they say. Making sure you don’t overdo things when you have those better days. I always end up trying to do too much and end up back in flare ups.
Yes totally agree about pacing yourself. If I have a good day I usually go crazy with housework but then end up paying for it!
I’m 34 and think it’s ridiculous that he said I was too young for injections, I had one years ago when they thought it was my Sacroiliac joint causing problems. The injection didn’t work then because I was covered in Endometriosis so that was causing all the pain. I’d happily try one again now I don’t have the Endometriosis at the minute but he just doesn’t seem willing to try anything 🙄. I’ll fight to see someone else.xx
Most pretend all nerve pain will not radiate down your leg, that's the sacral nerve. Whoever that doctor is, I would find a new doctor. Read the article, taking the shame out of pudendal neuralgia. Take it to your doctor, and demand treatment. Dr hibner in Phoenix Arizona is the best doctor in the United States for pudendal neuralgia treatment. I had my decompression surgery by him, and have had pudendal neurology for over 15 years. Whatever I can do to help, let me know
I've been told I have chronic pelvic pain (after a lap for endo and finding nothing apparently this is an okay diagnosis) and it was actually the Urologist that gave me the diagnosis, I've been referred for Bladder Installations (in hope it will stop causing stress on my pelvic floor, I get the whole UTI symptoms but nothing grows). It's a long old treatment but it helps rebuild the bladder lining so you're no longer so prone to UTI's can aim to reduce the impact of IC, another thing he told me to try is D-Mannose, its completely natural and you can get it from any health store, the bacteria is more attracted to the D-Mannose and attaches to that rather than the bladder itself! It might be worth to discuss this with your doctor? And at least try the D-Mannose! The best piece of advice I was ever given was to make sure you trust your doctor, I moved from doctor to doctor for ages (I think I saw every single one in the practice) and didn't find someone that I felt truly cared and I could trust till I moved practice! Take the power back and find someone who will listen! Sending you all the luck that you can move forward pain free soon X
Ey! I am not an expert and it is difficult for me to give you an accurate advise. I am just a girl with endometriosis (endometriosis cyst in left ovary) which avoided surgery by using mirena (the endometriosis cyst shrunk thanks to mirena).
Anyway, I was also in pain and discomfort in my pelvic area. And after mirena I had a vulvodinia episode that lasted several months. Doctors gave me amitryptiline, and also I went to a pelvic floor physiotherapist. And much much better!!! I think to go to a pelvic floor physiotherapist will also help you.
Anyway, physiotherapy is not the solution, it will just help you. You should find a very good doctor and follow his advise, plus also physiotherapy.
The bad thing is that you should also go to a good pelvic floor physiotherapist . The first one I went it did nothing on me. But after that, I met a group of pelvic floor physiotherapists that are helping me a lot. I hope you could fine a good one.
Well, probably it is little gross to tell here. In my case, I do nothing: just lie down and let the physio treat my pelvic floor muscles (since I have contractions and congestion). Yes, they sometimes introduce the fingers into your vagina that's why I prefer a female-physio for this, it is little shocking but you will quickly normalize it as soon as you see the physio helps you . They also treat me the area with radio-frequency, I think. the machine is called INDIBA: indibaactiv.pe/en/indiba-ac...
Also, I had to use dilators at home in order to help the muscles to relax , since my problem is hypertonia due to pain and ovarian cyst plus my constitution...
Again: it is important to look for a GOOD pelvic floor physiotherapy, try to look for the best you can
By the way, I think doctors should help you as much as they can in trying to eradicate the pain. In relation to the psychologist, It is sure your pain is not in your head! But It is known that when people are in chronic pain it affects the biochemical in the NS (nervous system), if a psychologist helps you to deal with the pain you will feel better. It is known that everything is connected. Difficult to explain here, plus that I am not an expert, but I do know that psychologist is also need when dealing with chronic pain! BUT FOR SURE THE PAIN IS NOT IN YOUR HEAD.
For instance, amitryptiline is a psychiatric drug that it is used also for the pain. And Gabapentin is an antiepileptic drug. Both drugs helps the NS to do not feel pain, but it does not mean you are crazy or epileptic. Nervous system and pain is complex
No I’m down in Plymouth but I’m guessing most pain clinics run them. That’s a crazy time to wait when you’re in pain!! What a joke. Are you going on it in March then?
I didn’t think to ask if there was a wait for the course I just assumed I’d start soon 😩
I have been waiting for my appointment to come through, my dr did the referral in March last year!!! I have chased it but just keep getting told it’s a long wait. I’m in Exeter. I had been to the pain clinic a few years ago but found the pain specialist really patronising, she was like maybe if you stopped having surgery and allowed your body to recover you wouldn’t be in so much pain! Yeah because I really wanted repeated surgery on my bowel!
Oh my word that’s nearly a year??!! What appointment is that for? Is it for the pain clinic or to go on the pain management course?
I can’t believe their response to you last time, well actually I can as I had similar. The other day the pain guy said ‘cathryn you e had 4 operations and nothing’s worked’. What a dick I had to have those ops for Endometriosis and adhesions. Like you, I’m not doing this for fun. Makes me so mad.
I’ll send you a private message so we can keep in touch as you’re only in Exeter so not far from me in Plymouth.xx
Hi, As you mention nhs I presume you're British? Is it me or do some posters sound like they pay for treatment which must make a difference?
I think we will always be left to languish in pain. I can't even get the chance to discuss my symptoms properly with a specialist. The mirena coil is a good sticking plaster but I worry that in years to come we may find it has masked more serious problems. We won't know until it's too late. Good luck with future treatment, hope you can persist. I'm afraid I just feel they want us to just manage and bother them as little as possible.
Yes I am British, so get to use the NHS for which I’m thankful, however I feel so desperate I would pay to see the right person.
I feel it’s all very cost cutting too. Back in September the pain consultant insisted I needed a pelvic MRI and talked about steroid injections. This was all in front of a trainee so looking back he was prob showing off and doing things by the book. Fast forward to this week when I saw him he was on his own and I was right at the end of his clinic and it was a different conversation. Now the operation hasn’t cured all my pain he won’t even look at other causes. Won’t do the MRI or injections just sticking me on a pain management course. It’s like they’ve given up. I know my pain is now nerve related probably caused by all the previous Endometriosis, adhesions and surgeries but I feel they don’t want to help me anymore.
Unfortunately I can’t have the coil as I have a bicornuate uterus so a coil won’t sit right.
The worst thing is I felt so rock bottom after that appointment I just wanted to disappear. I’m so lucky to have great family and friends and I am of sane mind (well most of the time! Lol). But the scary thing is how low I felt, I can see how easy it can happen where people who haven’t got support and maybe have mental health issues would hurt themselves after an appointment that gets you so down because who wants to live a life of pain. It’s soul destroying.xx
So sorry you are going through this. I went down this road and many test for chronic pelvic, bladder and vaginal pain 7 yrs ago. I had cystoscopy for I.C, but bladder all clear, but urodynamic test showed pelvic floor dysfunction causing difficulty urinating. Tried physio for pelvic floor, but it just made pain worse. It took a year to get diagnosed after an attempt by my Gyno to do Lap. All my organs stuck together due to large adhesions and pressing on nerves and no way of removing them as too many and they only come back. I was sent to a pain specialist who started my on 10mg Amytiptiline, which is one of the drugs your taking. It took about 5 weeks to get some relief and get use to the side effects that eased after 6 weeks. After 6mths had to go up to 15mg and 2yrs later 20mg, but have just yesterday gone up to 25mg as i have sciatic pain though my bottom pirifomis muscle, down my hip and back of legs. My MRI showed no nerve compression, but specialist said any tightness in the pelvis, as sciatic nerve runs through pelvis, or muscle tightness in the butt will cause nerve irritation. The pain your having that goes down your leg sound's like you have some sciatic irritation from somewhere. I'm not sure what dosage your meds are, but all three of them can cause urinary retention and bad constipation. Constipation will make your pelvic pain worse. I find a heat pack on my pelvis when sitting or laying down helps ease pain a little. I do hope you find some answer's, chronic pain, especially nerve pain is not fun.
Thank you for you reply. Sorry to hear you’ve suffered so much too. Pain is so debilitating.
What you’ve been told makes so much sense, I think I need to find a pelvic pain specialist. The pain guy I’ve seen just seems to want to fob me off to live a life of pain.
I use heat a lot too when sitting or lying. In fact a pretty much live with a hot water bottle tucked in the back of my knickers! Lol.
I used to be on 25mg of amitryptiline but it just helped with sleep not really pain in the day. So they reduced it to 10mg and introduced gabapentin. I’ve been on 900mg of that for a bit but over next couple weeks I have to gradually increase that to 1800mg!!!
Some days are worse than others but it really doesn’t take much to flare my pain up.
I’m quite used to all different meds causing constipation now but I’m pretty on top of that as can’t be dealing with that on top of the usual pain and like you say it makes pain worse.
My poor bladder has never been right since my big op where I was all stuck together but I have catheters for when I feel I’m not emptying properly.
I’m not going to give up and will fight until I get some answers but I think this appointment this week has knocked me back a little. It’s lovely r I’ve gone round in a huge circle. It was pain management in 2013 that tried to tell me my pain was psychological and only because I begged to be referred too gynaecology did they send me there. They actually said they were only doing it for my peace of mind as they didn’t think I had Endometriosis.
When I was seen by gynaecology they were furious as said I had textbook symptoms. Ever saw nice then I’ve always been under gynae and they’ve been fantastic with me.
Unfortunately they can’t really help me anymore as there’s currently no Endometriosis (well any they can see!) and he said he doesn’t want to look at a hysterectomy unless absolutely necessary and not until I’m mid 40’s.
I understand that and actually don’t think I need that anyway. Like I said I’m sure it’s nerve related but pain guy not agreeing 😩.
Sorry to go on, it just helps to talk to others who understand. Your response has been really helpful. Thank you.xx
I'm in Australia Cat and i guess i'm lucky my GP who i have seen for over 20yrs always keeps trying to look for answers if no success with one specialist. I have had a lot of abdominal surgery which seems to catch up to you later on in life e.g, adhesion. I had 3 - section, a non cancerous tumor removed from my lower abdoman, a hysterectomy at 43, i'm now 60yrs, for large fibroids and severe endo and about 5 laps for removal of ovarian cysts over 7 yrs. My pain came out of the blue, i thought at first i had a UTI as it seemed all in the bladder. After ruling that out was sent to Urologist who said the top of my urethra may be narrowed so did a urethral stretch. That made it worse so he sent me for urodynamic testing, that's when Pelvic floor dysfunction was diagnosed. From there a pelvic floor specialist for physio done within the vagina. She was very experienced, but for me make pain worse. Then the vaginal pain came and the pain from pelvis, bladder and vagina was off the chart's as you know. I had to cut my work hours down to 3 days as i worked in Pharmacy and was on my feet all day, but sitting didn't help either. Then i was diagnosed with advanced Thyroid cancer and had to leave work and go on disability. I have been bringing up 3 children on my own since the age of 35yrs so money was very tight. All of this pain started at the age of 51yrs, and cancer diagnosis 1 year later. Finally, my Gyno tried to do a lap, but everything was stuck, couldn't see anything accept a twisted mess of adhesions, which were pressing on nerves. Pain specialist put me on endep/amytip 10mg to start and it took ages for some relief. As i mention in my previous post, gradually got up to 20mg and for the past 4 yrs have been ok with that dose. Would flare up at times and would then take 2mg valium 3 times a day to help relax pelvic floor. Now this pain in the butt and sciatica, so gradually going up to 25mg and hope it doesn't give more constipation. My Rhuematologist has given me a script for 25mg Lyrica a day if endep doesn't help, but i have been reading so much about the side effects, i'm a bit worried to take it. I also have severe Arthritis in my lower spine, but no nerve compression. Waiting to see a physio who can gently work on the piriformis muscle in the butt to try and release tension and hopefully take pressure off sciatic nerve. On a positive note!! my cancer is still in remission, for that i'm very thankful. Please stay in touch and let me know how your going. xx
Hi thank you so much for replying and sharing your story. You really have been through it, I’m so sorry to hear you had cancer but fantastic news that you’re still in remission.
I’m going to have physio as part of my pain management course so will be interesting to see how that goes.
My GP is pretty good too so I intend to see her to discuss everything but just going to wait until she has the letter from pain management as will be easier to discuss. I think they need to be sending me to someone who is more specialised in pelvic pain so I will persist until I get the right referral.
It’s just hard enough being in pain let alone having to fight to get the right help for the pain!
Best of luck with everything. I certainly will keep in touch.xx
It is sad to hear so. However, have you tried a holistic approach where you have the conventional medicine treatments and you do other thins as changing your diet, getting more nutrients (vitamins and minerals), exercising, stress management, and so on?
I've been diagnosed, I have cysts on both ovary, and I have been avoiding surgery because I do not want adhesion. I have changed my lifestyle quite a lot and read lots of books on the matter. I am still not completely pain free but I understand that this is a chronic illness and it is about coping. But some things helps a lot:
- Avoiding toxicity in the environment, xenoestrogens in cosmetics, soaps, cleaning products, pesticides, etc.
- Avoiding acidic foods like wheat, processed foods, sugars, alcohol, coffee, tea, cheese, etc.
- Use organic when possible. At list on the dirty dozen foods.
- Having a more alkaline diet, like eating more greens. This helps balancing your body PH.
- Supplementing your self with Magnesium, Zinc, Vitamin C, etc.
- Detoxifying your body by consuming herbs that help your liver to detox: Dandelion for example.
- Exercising helps detox, but you don't need anything too intensive that cause you to be in stress.
- Stress management by meditating, yoga, walks, music, comedies, better sleep, etc.
- Drinking filtered water...drinking lots of water to help detox.
- Serrapeptase Enzymes helps with adhesion for example. And even Q10 Enzymes helps a lot, or enzymes to help your digestion.
- Add anti inflammatory foods to your diet: ginger, turmeric, lemon, etc.
Search about this things, read about them, and take control of your health and body. Don't take my word for it or anyone else. You are the only person who knows your body, you are the only expert about your body.
Well, have a look on the following books, I find that they have helped me quite a lot. They have protocols for supplements and explain you what is bad for you and increase estrogen in your body.
* Endometriosis A Key to Healing Through Nutrition by Dian Shepperson Mills MA and Michael Vernon PhD HCLD
* The anti estrogenic diet by Ori Hofmekler
Hope this helps...and wish you all the health, energy, and joy from now on.
Thank you. I really will look into all of that. I do avoid a lot of the foods listed and don’t drink caffeine and hardly ever have alcohol. But there is so much more too look into.
I’ll do anything that might help me so thanks for the tips above.xx
Well, I do all that stuff listed and I can say It helps with the illness but it is not the cure neither. Do all that stuff but also following the advise of a good endometriosis specialist, and physio, and etc ...
In my case I think the best thing I did was to get the mirena coil inserted (following my doctor advise). And after that all that previous tips just helped a little more.
I really do not know which are the best doctors in the UK, but look for them. I live in Madrid and my endometriosis doctor is in Barcelona. It was money, but it was worthy since every doctor here wanted me to go on surgery and at the end the Barcelona's one have managed to avoid it
I know some people with chronic pelvic floor pain after laparoscopy, they underwent additional surgeries to treat that pain and they have improved! Seriously, look for the best best best doctor (or doctors) and follow their advise. Specially, because we all have the same illness but it affects in very different ways from one patient to other.
Hi, I haven’t posted on here before as it would take me so long to explain all of my symptoms, operations and medications that I have tried over the last four years. However, reading your story inspired me to comment - everything you have said above is exactly how I feel and exactly how I have been treated.
It’s at the point now where I’m pretty much bed bound each day. I have two children 10 and 7 and they get so upset that I can’t be ‘fixed’. It’s taken it toll on my life completely. My husband and I are currently going through a divorce route after 18 years together, I have lost my job that I had succeeded in, I have lost a lot of friends as it kind of came to the point that I think people dispaired with me cancelling arrangements and then when questioned on what’s happening with my health why I wasn’t able to give a clear answer.
I find ejwmpain so hard to describe to other people, similarly to you I get pain in the pelvic area all on my right side, this will also radiate down my leg into my foot. I suffer terribly with haemorrhoids and have had four operations On them alone.
September 2016 I travelled to oxford and had a LVMR - most people stay in hospital one - two days, I was in for over a week in the end.
When I speak to my gp or other gps like you I feel as though they are saying it’s in my head and counselling has been suggested. I did it but it hasn’t stopped the physical pain and the mental and emotional turmoil that it brings with it.
I don’t know what to say but I’m pleased you wrote this post so I know I’m not the only one who feels that way xx
Oh bless you, I’m crying reading this. Just saddens me that there is so many of us going through the same thing.
I have 2 children age 8 & 2 and like you all they know is that mummy’s poorly. I feel bad for the amount of stuff I can’t do with them. Just struggling to take them to the park, it’s so unfair.
Luckily I still have my job and they are really understanding. I’ve been off since my op in November but I may try a slow phased return next week. I’m kind of hanging in there until my youngest starts school next year but then I think I’ll have to give it up. It’s such a struggle to work and raise a family.
I may look to do something self employed from home just to keep my mind sane but I know that no other employer would touch me when they hear of my health and sick record.
I’m so sad to hear it’s ruined your marriage. My husband is as supportive as he can be but I know it effects him and it’s ususlly the sole cause of our arguments. I know I’m lucky he’s stayed with me as I’m fully aware most men would run a mile. It’s totally effected our sex life too.
Sorry I don’t know what a LVMR is? Did it help at all?
Where are you based on the country. If you want to talk feel free to private message me. We should never go through these things alone.xx
Hi, thank you for your reply. It is all very heartbreaking and depressing isn’t it? My family (mum, dad, sisters and new partner) try to understand the pain that I’m in but it’s so hard to describe and at times they forget and you are expected to do what a healthy person can do.
The LVMR is an operation which uses mesh to fix your organs back into the position they should be, my bowel was prolapsing so they used the mesh and tacked it to my spine. I have been in a lot of pain since I had it done though.
I’m in Exeter so only down the road from you!
I did a nail course so I could do it from home but have barely been able to do anything as if I’m not in pain I’m suffering with exhaustion.
It’s good to share this with like minded people xxx
Hi! I do not have many of your symptoms but I do have pudendal neuralgia. I just wanted you give you some info incase you DO have pn.
You said that you have to push your pee out. That is something that really irritates the pudendal nerve. Constipation is a huge contributer as well. Hovering over a toilet to pee is also very bad. Make sure you drink plenty of water and eat 30 grams of fiber everyday. I take miralax every day to avoid constipation.
When you have pn docs usually prescribe amitryptoline, gabapentin or Lyrica. Luckily, you have been prescribed these medications already so hopefully you will get some relief. I tried amitriptyline and gabapentin but due to side effects had to switch to Lyrica.
When you sit always use a cushion designed for pn. I use a Theraseat cushion which I bought online . There are alot of them out there that are cheaper.
There is a very informative facebook group for pn you may want to join. It is great and supportive.
I'm so sorry you are dealing with such awful pain. I've had mine for a year now but with medication and PT it is much better. There is hope!
Thank you for your reply. I’m leaning towards thinking it may be PN. I’ve had a lovely video chat earlier with a lady on here who has PN and we have so many of the same symptoms, pain in the same area.
I need to think of the right route to take now and find a decent Dr who’ll listen to me. My GP is very good so I will speak to her soon when she has the letter the hospital are sending her.
The Pain consultant the other day dismissed any problems with the pudendal nerve as he said it didn’t look trapped when I had a back MRI last year. I’ve since learnt that you can’t see PN on an MRI.
Think I have a fight ahead of me to get the right diagnosis and treatment but I’m determined. I had to fight to get my Endometriosis diagnosis so I’ve done it before. Its just all so draining when in so much pain.
I’ll check out the Facebook group too. Thank you.xx
Have you asked him about the possibility of your pudendal nerve being damaged? Look up the article, taking the shame out of pudendal neuralgia. Read that and see if that sounds like what you're going through, as I've had it for over 15 years and multiple procedures, way over multiple. Doctors do not understand, and it took them 6 years to diagnose me. I could write a book, but I saw your post and I'm willing to help. Let me know if there's anything you need
Thank you that’s really kind of you. After others have said about Pundendal Neuralgia I am thinking this is quite possibly what I have. I had wondered back along. I mentioned the nerve to the pain doctor and he just completely dismissed it and said it wasn’t trapped on the back scan I’d had last year! From speaking to others I don’t think you can see pudendal Neuralgia on a MRI. I’m going to read that article you’ve mentioned and I will be raising it again with the doctor! Thank you.xx
Please do. I would research the MRI. Dr Hibner in Phoenix does a specific MRI to check for PN. He was only one of three in the US in 2008 who did pudendal nerve decompression surgeries. I would look that up and see what he does to diagnose it. He works for St Joseph's in Phoenix. Not a lot of doctors know about it, and a gynecologist would be your best bet in providing the information. Or the Articles you look up. If you need anything, please let me know! The more damaged it is, if you have an entrapment, the worse the pain will get. If it isn't entrapped, it will become living hell. Hope I can help!
Is there a pelvic floor physical therapist in your area? Go!!!! Also read the book by Amy Stein “Healing Your Pelvic Pain”. I had a nerve ablation on my S1, 2 and 3 and got no relief for back or pelvic issues. The steroid injections in the spine are a hard road. Also, some drs do Botox in the pelvic floor which is wonderful for about 4 months. God bless you!
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