I am so sorry to have to write this post - I had hoped that, by now, there might be an end to my troubles. Unfortunately, I have gained no relief. I am SOOOO confused!
I was diagnosed with Endo in late 2010, and a lap surgery confirmed it in early 2011. This was after more than 9 years of incorrectly diagnosed symptoms - and the associated suffering! During this first surgery, I had laser ablation, and afterwards, I was told that ALL my Endo was gone.
Not long after the surgery (less than 3 months) I ended up in A&E in complete agony - unable to walk properly, unable to move from sitting to standing, my body twisted with pain and cramping so that I could not stand straight... This happened on a further couple of occasions, and each time I was fobbed off with a defensive response from the Doctor I saw, and a suggestion that it was "muscular". I was given painkillers, and on one occasion, physio - but nothing helped. So, I sought a second opinion from an Endo specialist (the original surgery was done by a "bog-standard" Gynae). I had to fight SO hard for this second opinion, and it caused SO much trouble with my G.P. and Gynae... It left me feeling like they saw me as a nuisance, and resented me for asking questions...
Still, a further lap confirmed that the original surgery had left some Endo in situ - it had been missed. I also had Deep Infiltrating Endo in my uterosacral ligaments that had been missed. So, I had a THIRD lap, that included radical excision of Endo. Still, I continued to have pain following this, and I ended up having a fourth lap, in which I had a peritoneal biopsy, and had adhesions cut away.
During the third and fourth laps, my ureters were stented and I had a bladder and bowel prep because it was suspected that I had Endo on, or near, bladder and bowel. After the surgeries, I was REALLY unwell, and my bladder shut down for a while - I ended up with a catheter! I was NEVER fully told what stage my Endo was, NOR was I told properly where all my Endo was - or where the adhesions were. My new Endo specialist told me after surgery four that he did not want to risk further surgery if I had pain or future symptoms, because of potential damage to my bladder or bowel. Also, because I suffer from adhesions. However, he told me he thought he had removed all my Endo.
For a while, I was pain free. However, over the last year (lap four was in 2014) I have seen a recurrence of symptoms. I still have VERY painful periods, in which I pass huge blood clots, and suffer a lot of cramping. I also suffer from flooding, especially if I am warm, or exert myself physically. I experience bloating and water retention around the time of my periods, accompanied by frontal pelvic pain (near my pubic bone and the site of my lap scars). Added to this, I get intense pressure in my bladder and a feeling of needing to pee. And I get diarrhoea, too, for up to a week after the period has ended. Finally, I suffer from constant lower back pain, worst on the left side, which can also radiate to my buttock. It is aggravated by sitting, walking, leaning forwards, or by lying on my back.
I have sought a further opinion from a new Endo specialist, and recently had an MRI scan. Following this scan, I was told that no Deep Infiltrating Endo showed on the image. Other types of Endo were NOT discussed. I was also told that I had damage/deterioration to two vertebrae at the base of my spine, and damage to my sacroiliac joint. The specialist suggested that this could lead to some of my pain and symptoms, as there may be pressure on nerves connecting to my bladder and bowel, as well as inflammation. I was NOT told how the damage could have occurred, or how severe it is. I was told I could be referred to a pain specialist (this was over 2 months ago) but I am still waiting to hear. I was also told that I could have another lap, if I wanted one, as the specialist felt I had adhesions. He said he could trim the adhesions back, but they might regrow.
I am now SO confused, because I still have symptoms but am not clear as to what is causing them. I am concerned about the joint and nerve damage I have sustained, and want to know how it occurred - also how it may be treated. I am also baffled, because I still feel as though I have Endo symptoms. I still have problems with my periods, which CANNOT be caused by joint damage. If Endo is not causing my period problems, what is? Could it just be adhesions? Should I have them removed, or is this too risky, and pointless? Will they simply regrow? Might the MRI not have shown up some Endo which could still be there? Is this why I have been offered another lap? And what about the nerve damage?
I am hoping somebody could offer their thoughts on my situation, because I feel at a loss to know what is the best way forwards. I am also afraid to go back to the doctors, because they have made me feel like such a nuisance. I have had to fight, and fight so hard to get anyone to take my symptoms seriously, and to get the correct diagnosis. This whole issue has become a real pain! I jus want to make some sense of it.
Apologies for the long post... I just needed to explain what is going on. I would very much appreciate anyone's advice. Thank you in advance.
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Scooteeder
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Hi Hun , has anyone ever mentioned adenomyosis? This can also have an effect on bladder and bowels and problems with period etc. It might be worth doing some research into it.
Funnily enough, this was mentioned years ago, when I first started getting my symptoms. Unfortunately, I tried both the Pill, and the Mirena, but both were totally unsuccessful and did not resolve my symptoms. In fact, the Mirena actually caused more problems, in that I kept getting really heavy breakthrough bleeding and flooding. It also slipped, which made it less effective.
The only other "treatment" my doctors initially offered was a hysterectomy. I did NOT want to go down that route, because I was only in my late twenties when my symptoms began. I think that age 29 or 30 is a little too early to be menopausal!! Also, they had not even given me an accurate diagnosis then, so I didn't know what was behind all my symptoms. Seems a little unreasonable to suggest a hysterectomy BEFORE even getting to a definitive diagnosis!
I had to fight tooth and nail to get an accurate diagnosis of Endo, and before this happened I was misdiagnosed several times - with IBS, with "stress" and with Poly Cystic Ovaries. None of which were correct.
I know what you mean by being misdiagnosed. I'd actually been suffering with symptoms from the age of 15. Would get told it was all in my head or that it can't be that bad. Then 10 years ago was sent to a so called bowel specialist who after ask two or three questions decided I had Ibs. I never did believe this. Then in October was sent for us as we had been ttc for four years with no success. Turned out I had a 6cm endometrioma on/in my left ovary. Had exploratory lap in July last year which confirmed severe endo and possible adenomyosis. On 3rd March this year I had abdominal hysterectomy removal of both tubes and ovaries and excision surgery. Also had work done on bowels and uteras. Despite a couple of complications after surgery I feel great so much better than before surgery. I'm 43 this year and it still makes me angry because if someone had listened even 5-10 years ago I probably could have gone on to have a child of my own . Unfortunately with adenomyosis the only way to confirm it is with pathology after a hysterectomy. Diagnosis is normally only guess work based on scans and appearance of uterus and symptoms. I really hope you find answers and get some relief. Good luck Hun.
I'm so sorry to hear of the trouble that you had to go through in order to get an accurate diagnosis and the correct assistance. I can totally identify with being told "it's in your head" and "it can't be that bad"; I can also identify with being incorrectly diagnosed. I've had similar issues myself - being told it was "just normal period pain" and that I wasn't conceiving due to "stress". I was also misdiagnosed with Poly Cystic Ovaries before getting an accurate diagnosis of Endo!
It seems we females must run the proverbial gauntlet before getting accurate diagnoses and treatment. I cannot help but think that, because Gynae disorders are largely internal (and therefore invisible) it is so easy for unsympathetic or ignorant people not to believe that we genuinely are ill. It's also very easy to mistake one disease for another, unless the correct tests are done and the correct questions are asked. The problem is, that it takes a knowledgeable doctor to even suspect such things as Endo. Most people haven't even heard of Endo, Adenomyosis, etc. so they don't even consider them!
I am glad to hear that you are now feeling better following your surgery. I hope that you continue to remain well, and that your symptoms never recur. It's such a relief when you begin to feel that you can start living your life again - unless somebody suffers with gynae symptoms, it's very hard for them to understand just how much they interfere with life. Perhaps that's why some people can be so unsympathetic and hurtful?
I just hit 45 recently, and again, I can identify with the feeling of wondering what might have happened if somebody had listened, and I'd been correctly diagnosed and treated sooner. It took me over 9 years to get an accurate diagnosis of Endo, and to get treatment for that - unfortunately, as you can see, I still have symptoms... so my gynae issues are ongoing. Having kids didn't really come into it, because I needed surgery to remove my Endo (I ended up having 4 surgeries). The pain, fatigue, upset stomach, heavy periods, and resultant anaemia were too much to put up with.
Anyhow, I've talked to some other ladies on the forum, too. You know, it's very helpful having somewhere to come to and to talk with people who have experienced similar problems. In "real life" not one of the women I know has experienced Endo, or gynae issues, so it's very hard to talk to family and friends about it. They do not understand. I think that women who don't have gynae problems just take their fertility for granted. At least here I can get some good advice. I've decided to wait for my referral to pain management services to come through to see what they offer. Then, I may also consider having a further lap surgery just to confirm that Endo is not lurking somewhere.
Sorry for the long reply... but, thankyou very much for your words of advice. I wish you all the best. x
I wish you all the best too Hun. I think one of the main problems is that GP 's are not educated enough on gynaecology issues, endo in particular. I too do not personally know any one with endo but funnily enough I've found men seem to know more about it than women, when it should be the other way around. Are you with a specialist from the BSGE list? That's where I think I was really lucky. I was referred straight to a endo specialist. He's been pretty amazing. After my op he had to fly out to India but he kept in touch via email to find out how I was, then when I came home he actually phoned me from India to make sure I was ok. I'm glad he was my surgeon and not a general gynaecologist. I really am very positive that he has been able to give me my life back. Hopefully you will get sorted and feel the same. That's what's I wish for for everyone that is suffering this horrible disease. Take care Hun and if you need to talk I'm here.
Could not agree more with what you say about GP's. I really do think that gynae disorders ought to form part of their education; even if it's only a basic overview. Then, at least they would know how to make appropriate diagnoses and referrals.
I think the thing about men knowing more about Endo than women is perhaps a case of there simply being more male doctors than female. Thus, it makes it look like men know more. In general, I've found that neither gender seems to know very much, and that the men and women in my life are equally ignorant. I guess it's high time that society got more educated about Endo and other gynae problems, because they are more common than people think.
As to the BSGE thing - I've been with 2 Endo specialist centres. My very first surgery was with a basic gynae, and it was a complete mess. I then did some research online and found a specialist not far from where I live. He did my further surgeries, and it was a far better experience. However, as I continue to have symptoms, I sought yet another opinion - hence having an MRI scan elsewhere. My first specialist had not told me about the joint damage.
The impression I get is that, even with some specialists, they are not always the best. They do not always give you full information. That is why I believe I continue to have problems - because I have NEVER been given FULL information. My first gynae made a mess of my lap, told me all my Endo was gone when it wasn't, and discharged me with no follow-up. I was never told where all my Endo was, nor what stage it was. Then, my first specialist located Deep Infiltrating Endo. This was removed, but he still did not tell me where all my Endo was, or what stage. I had a bowel and bladder prep before his surgeries, but he never told me if Endo was on or near these organs. After surgery four he told me he did not wish to perform further surgeries because of risks to bladder and bowel, and because of adhesions. He also told me - after the event - that he'd done a peritoneal biopsy. I was never told why. I get the impression that my Endo was in more than one part of the pelvic cavity, but this has never been confirmed, or dismissed. Images I've seen following surgery are all different, and all show Endo, but they have not been explained to me (i.e. I don't know what part of my pelvis they are). My latest specialist did the MRI scan, and told me he could not see Deep Endo. However, he did not mention any other type of Endo - so I could still have Endo, and not know about it. He did offer me a further lap, which makes me wary.
I just wish that somebody would tell me the WHOLE TRUTH and give me FULL INFORMATION. In the past, I've asked to see my full medical records, but when I got them, there were bits missing. It was really obvious - in one section, a period of over a YEAR was missing (which included the year in which I first got referred to the gynae who made a mess of my first surgery). I have long suspected a cover-up because I complained about my incorrect diagnosis in the past, and the Hospital I was under just fobbed me off. I never had such severe lower back pain until AFTER my surgeries - I cannot help wondering if the damage to my joint was done DURING SURGERY.
Apologies for being such a grump! I had a really painful night's sleep - my back is playing hell, and I'm up to the eyeballs on painkillers. I just wish my symptoms would go away - I feel as bad following 4 surgeries, as I did before I ever had them.
Hun that's what we're here for you rant away any time. I wish I had a magic wand and could take all the pain away , I really do, but unfortunately I can't. But I can be here if you need to talk or rant.
I was thinking how similar you sound to me hun and I've recently been diagnosed with adenomyosis after a mri scan so I don't know if this would always show up on a mri or not. My mri also showed I had a collapsed bowel, I had Endo removed off bowel last March so we think it's collapsed cos of adhesions so my consultant is doing another lap to sort out the adhesions and any Endo that's grown back. Doesn't sound like you are getting much help at all. My mri did not show any more Endo since I had it excised, apart from the adenomyosis but it doesn't always show Endo on a mri I don't think. I'll let you know after my lap if any Endo was found that way we'll know if it does or not I suppose. Where do you live? Xx
Sorry to hear that you've had such a rotten time of things. I really do hope that you get the relief you need and deserve following your Lap.
I'm considering having further surgery myself, because even though I'm being told that no Deep Endo showed up recently, I'm feeling as though my symptoms say there may still be Endo somewhere. My current symptoms are pretty near identical to the ones I had BEFORE they even did surgery, so they are consistent with all the symptoms I had when Endo was present. I defo have constant pain, and bowel symptoms, so there is clearly something going on. Still, I am now a little confused as to the joint damage issue.
I've just phoned the GP this week to ask for an appointment to discuss all this, because I feel my treatment/care still is not well managed. I want to know I've been referred to pain management, but I'll probably also ask about an Orthopaedic referral too, to sort out the joint/spine problems.
It's starting to feel like permanent relief is a fantasy - even if my Endo is under control, I now have to deal with joint pain! Huh! One thing after another!
Still, tanks for the support - like I said, I do hope that things work out for you. Good luck. x
Hi the mri can only show up deep infiltrating Endo, it won't show up mild Endo I.e. Flimsy adhesions or scar tissue adhesions. If you have recurrence of Endo, even if it is mild it could be causing you a lot of pain if it's related to scar tissue, pulling on organs or near a nerve.
I agree the vertebral damage etc could be causing you pain, maybe ask your gp for a referral to an orthopaedic specialist in light of this? Damage to vertebrae and sacroiliac joint are very common if you've had children. If not there are many ways it could have happened and someone who isn't a specialist wouldn't specify or speculate on this as it isn't their area. I think you said the doctor said you *may* have inflammation surrounding a nerve due to the joint damage or have pressure on the nerve which isn't the same as damage per se. If you see an orthopaedic specialist and they feel nerve damage has occurred and requires treatment they'll refer you to neurology so not too complex, but perhaps time consuming.
This may take a while to sort out but at least you've had the Mri and know about the skeletal issues now. Also you know there isn't deep Endo - which is great news as it can be so damaging.
I know it's so frustrating. If you go to have another lap and they find Endo, make sure you're put on prostap or the pill (or both) after to try and prevent recurrence happening again.
I had a chat with hubby this morning, and told him that I am thinking about having a further Lap. My symptoms are becoming increasingly irritating and uncomfortable, and last night I did not sleep well as a result. I had to get up several times in the night to go to the loo, and also, my back and pelvic pain prevented me from getting comfortable in bed. Even as I am sitting typing this, I still have lower left-sided back pain, and a heavy, dragging pain at the front of my pelvis (and that is AFTER taking Diclofenac and Cocodamol!).
I guess I am just getting completely fed up with pelvic and back pain, as well as the other ongoing symptoms. I do feel good to know that no Deep Endo showed up, because that has been my main fear. I have suffered with Deep Endo in the past, and the pain and symptoms were truly horrendous. I do not want to find myself back at A&E again! Nor do I fancy going through another radical excision surgery - it took me ages to recover from the last one. Still, I am a little concerned that there may be other forms of Endo present, especially as my symptoms are consistent with what I previously experienced when I did have Endo still growing.
I am also more than a little frustrated to have become aware of the joint damage. I am currently awaiting referral to chronic pain services as a result of this - my Endo specialist suggested that they may know better how to deal with the problem, maybe via physio. What concerns me is that I have not had children, so the damage did not occur that way. My Endo symptoms occurred not long after I first met my husband, so even though we have been married for some time, there has not been a chance to even consider starting a family. Instead, I ended up having four surgeries for Endo! I did not even consider starting a family whilst I did not know what was causing my symptoms - the pain and fatigue, as well as the upset stomach and bowel symptoms were just too much to bear. By the time I found out that I definitely did have Endo, I was already in my late 30s, and had reached the cut off point for IVF (how convenient for the NHS!). It took them over 9 years to correctly diagnose my Endo, and the first surgery failed even to remove it all.
The joint damage worries me because in my family, some women (including an Aunt) have inherited a congenital condition that weakens their hips prematurely. My Aunt ended up having a hip replacement when she was only in her late 40s. Like me, she was diagnosed as a baby with Talipes, and joint/tendon problems in her legs and feet. I had surgery as a kid to sort this out. I also spent time as a baby with my whole body from the hips downward encased in plaster, because doctors suspected I might have the same hip problems as my Aunt. As I grew older, nothing more was said about it, so I have always hoped it was not true. As you can imagine, this recent discovery really brought the issue back to me.
I will wait to hear from the pain team, and see what they offer regarding the joint problems. In the meantime, I am still considering a further Lap. However, I'll probably wait to see what the pain people say first, before deciding on the Lap, as they may offer something that deals with the pain, and then the Lap may not be so urgent. Still, I would like to know whether there is even superficial Endo present, so the Lap may end up being an option.
Hey, have only just started to read your post and the first thing that strikes me is your pain meds are totally inadequate and possibly damaging - 1. Stop taking diclofenac/nurofen - yes it's good for inflammation but only in the *short-term*, speaking from personal experience using these daily for a number of months post surgery caused terrible damage to my bowel, mimicked Endo pain and Endo bowel issues and resulted with my having to go on steroids for 6 months to heal - so avoid. If your pain is that bad you need to be on 30/500 cocodamol combined with tramadol if not morphine which should really sort out a lot of your pain xx
- so basically quit the NSAIDs, get better more suitable pain meds for long term use, make sure you are on at least the pill or hormone injections to calm all this Endo fury down, adhere to Endo diet and try alternative therapies. If you do all that whilst waiting for your referrals you really will be feeling a lot better xx
With the family history of hip issues it would definitely be worthwhile getting a referral to orthopaedics - if you don't take the appointment it will do no harm. You probably need specialist care in conjunction to pain management/physio to get past this.
Sorry it's taken me a while to reply - I had a really awful night's sleep. My lower back pain is aggravating today, and I also have an upset stomach, bloating and feel very tired. Even painkillers did not help me sleep through the night. I find it VERY uncomfortable lying in one position, and have to change position a lot, even in my sleep. Hubby says I fidget like crazy! I end up getting up loads in the night - NOT good for rest.
Anyhow, I am awaiting referral to chronic pain management services at present. That is what was offered after the appointment where they discussed my MRI. I'll take on board what you say about Diclofenac. However, that leaves me VERY limited in terms of what I can take. I have Asthma, so have to be careful using Ibuprofen (which does not hit the pain anyway!). I used to take 30/500 Cocodamol, but unfortunately I have a nasty reaction to them - they make me VERY nauseous, dry-mouthed and I itch all over. Thus, I ended up with the Diclofenac. I have been on Oromorph in the past, and was offered it on repeat prescription (don't know how I feel about that!); again, the problem is that it makes me very nauseous and "hung over". I am quite sensitive to tablets, as well as to anaesthetic, which is a bit of a nuisance to say the least. The Pill, and hormone medications, are also out of the question as a result. I tried both Dianette and Marvelon in the past, as well as the Mirena, and suffered horrendous side-effects. I'm hoping that pain services may be able to review my pain medication and sort out something more suitable.
Since reading the replies here, I've had a chat with hubby, and suggested that I may go ahead with the further lap surgery - just to rule out Endo and adhesions. I also agreed to make an appointment with my GP, because I need a blood test for anaemia anyway. I'll ask about an orthopaedic referral then, because I do think it's probably a good idea to find out what is going on with my joint. If I'm considering a further lap surgery, I want to know if this is likely to aggravate the joint or not.
Thanks for your suggestions and advice - at least I now feel like I have some sort of "action plan". x
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