Recurrence Of Symptoms - I'd Like To Know What I'm Dealing With.

[Scooteeder]

I'm going to summarise a little personal Endo history first, so that readers know where I'm coming from...

Diagnosis of Endo was confirmed in 2011, during a lap surgery. This lap was useless, because all that the surgeon did was laser away superficial Endo. Patches of Deep Endo got missed! Before this, I'd had symptoms for over nine years, that my doctors had not taken seriously. Instead, they kept making incorrect diagnoses (e.g. irritable bowel). They also fobbed me off with the Pill for ages, and kept telling me that my symptoms were "just period pain", or "stress".

Following the first, unsuccessful disaster of a surgery in Blackpool, I had a major recurrence of symptoms, including excruciating pain that landed me in A&E on at least three occasions. I recall that each time, NOBODY seemed to want to discuss Endo! Instead, the doctors kept referring to it as "muscle pain" and fobbed me off with painkillers. I have tried all manner of painkillers from Ibuprofen and Diclofenac (which I should not really take as I have Asthma!), to Cocodamol and Oromorph (when pain was at its worst). I have also been made to try both Tranexemic acid and Mefenamic acid - neither worked. AND I have also tried the Mirena Coil, which incidentally, I did NOT want, and which did NOT work.

I looked up Endo specialists online, and asked for referral to a BSGE centre where I had my next lap. This confirmed that there was a lot of scarring, and that I also had Deep Infiltrating Endo, that my first surgeon had left in my body (no surprise there! The first surgeon was only a basic Gynae!). I had a third lap sometime in late 2012, to excise the deep Endo. Following this, I experienced some temporary relief for about 6 months. However, I had been a little concerned, because NEVER was I told exactly WHERE all my Endo was; and nor was I told what STAGE it was (although I now understand that deep Endo is stage 4). MY confusion was added to by the fact that my specialist wanted to put me on hormone treatment (e.g. Zoladex) after the excision, which made me wonder if there was STILL Endo left in my body. He also made it clear to me that further surgery would be a risk, and that he would prefer not to do it. I was understandably confused, because before the lap I'd had a bowel prep, and was stented - so I could not help but wonder if the Endo was on/around my bladder and bowel, especially as I had symptoms that suggested this.

In 2014, I had a further lap under the same specialist. I did not take any hormone treatment, because I had a REALLY bad time on both the Pill and the Mirena. The side-effects were so awful, that I have never been able to face the idea of taking hormone treatments like the Zoladex or Prostrap that were suggested to me. I'd rather cope without! Still, the final lap went ahead to trim back adhesions, and I also had a peritoneal biopsy. Once more, I was stented. Afterwards, I was told all my Endo was gone - but the surgeon still wanted me to go on hormone medication. He defo did NOT want to do any more surgery! Confused yet again!

So, afterwards, I coped without hormone treatment. I do, however, take painkillers regularly because I still have pain, and other symptoms. These have NEVER gone away, despite surgery. I sought a second opinion at another specialist centre late in 2015, and had an MRI scan there. After this, I was told that no Deep Infiltrating Endo had been visible, but that damage to my hip joint, and to the base of my spine had been found. I cannot help but think this is why further surgery is being refused! However, I am also aware that scans do not always show Endo, and my symptoms suggest it may still be present (or at least that adhesions are present).

I am writing this today because I have had a week of excruciating symptoms. These started with what I thought was an infection, because I felt tired and listless and achy (like flu). However, about 2 days into the week, and I had a sore throat and tender glands (which ALWAYS happens BEFORE a PERIOD). I am also short of breath, with pain in the right hand side of my chest (ribcage area). My stomach feels bloated and extremely tight. I have lower pelvic pain at the front, right where my lap scars are (tummy button is worst). When I move I get a tugging sensation. I also have lower back pain, this radiates from the centre of my back (spine area) to my hips, and is worst on the left. When I breathe in, it feels as though my whole abdomen is being pulled sharply upwards (I feel a tugging sensation throughout). My pain feels crampy in general, and I am having to take painkillers. It is relieved slightly by sitting with a hot water bottle pressed to my stomach, and another behind my back. I feel constantly nauseous, which is worst when lying on my back, bending, or after eating. My left hip is painful when walking. I currently have an upset stomach (diarrhoea), and have noted that pain is temporarily relieved after going to the loo. I am about 3 days before my next period is due.

Personally, I am utterly convinced this is Endo related again. I have had ALL the symptoms above previously, and they were connected to Endo then. However, I am now in a position where I am no longer under a Gynae or BSGE centre, because they believe my Endo is no longer causing my symptoms (they even told me they think my Endo is gone). Also, I have been told that further surgery is too risky - although nobody has explained why. This makes me feel left in a position where there is no help available, other than to accept treatments which I have tried in the past and that don't work for me (e.g. Pill or Mirena). The other option is hormone treatment, which I really DO NOT WANT, because just taking the Pill made me feel SO ILL. I suffer really badly from side-effects (the Pill made me bloated, and very, very nauseous). I would prefer to have another lap to see if there is Endo or adhesions present that can be removed.

What bothers me is that:

a) I'd have to ask for referral back to a BSGE centre, which I don't want to have to fight for all over again (getting diagnosed in the first place was a fight)

b) I am concerned, myself, about the risks of more surgery, but I'm also baffled as to why they haven't been clearly explained to me - could the risk be "frozen pelvis"? Or is this what I already have?

c) I am confused as to what my symptoms are caused by - it really DOES seem like Endo or adhesions to me, but nobody appears to be listening to what I say

Has anyone else been in a similar situation? If so, what did you find worked? I really want rid of these symptoms, but I don't wish to jump to conclusions or demand unnecessary treatment. The frustrating thing is that, sometimes, my periods pass relatively symptom free, and are pretty easy to manage. Other times (like this time), they are horrendous. Inbetween, I do still have some non-period related symptoms, but I'm not clear whether they are Endo related or not, because they are mostly hip pain on walking, occasional back and pelvic pain, and occasional upset stomach.

Any advice would be welcome. Thanks. E. x

[KSvedenmacher]

I am sorry you are struggling so much. Can you ask your GP for the results of your surgery? Your consultant would have sent a letter explaining what he found etc. to your GP which is what you could have. That may give you a better insight in what was found and what was done. I had surgery 11 years ago but it wasn't until a few months ago when I requested the lap report that I really understood the extent of my endo and what had been done exactly. Alternatively you could ask you doctor to explain why another surgery is so risky, seems to me that that is important for you to know.

[Charlenexxo]

I have had endometriosis since I was 21 I am soon to turn 29. Going on the pill helped yasmin the combination one. It don't help straight away but it eventually does. I take mine back to work to lead a normal life. I went on the fodmaps diet. It literally changed my life and my endometriosis. You need to follow the fodmaps diet properly and you will start seeing results no swelling tummy and no running to the loo etc. The endometriosis will also improve. What you eat is so important with endometriosis. I suggest seeing a dietitian and starting fodmaps. Also avoid drinking milk and eating bread.

[Charlenexxo]

Go on fodmaps and actually be taugh on your self and stick to it. You will start to feel better

[Hidden]

I think most people are stented when they have this type of surgery. So I think that alone does not tell much. Hope you feel better soon!

[Scooteeder]

Sorry not to have returned to this sooner - have been busy.

Anyhow... I tend to find that talking to the G.P. and even consultant's secretary is pretty useless. Throughout the time that I have been dealing with Endo, I have found the medics involved to be evasive, dishonest and generally not much good at communicating facts. Indeed, much of the time, their behaviour has been more about trying to fob me off, and get me to go away - to put up with pain and symptoms, and just manage on my own - as opposed to explaining things.

For example, I asked to see my FULL medical records some time ago. The G.P. surgery arranged for me to come in and see them, but when I got there it was OBVIOUS that the full records were NOT made available. There were clear gaps, sometimes of MONTHS, and VERY LITTLE info relating to my Endo. It was as though they had deliberately kept this back! I complained, and even contacted the Information Commissioner. The G.P. then LIED in response to the complaint, and said that I HAD seen my full records. So - I ended up changing G.P.! The one that had LIED spent NINE YEARS refusing even to believe that I might have Endo. I had to ARGUE my case just t get referred to a Gynae! I suspect that when my diagnosis of Endo was finally confirmed, this G.P. was so embarrassed that she got it wrong! Afterwards, she could not even look me in the eye during appointments, and every time I tried to discuss Endo, she changed the subject! Fortunately, I reported her to the General Medical Council for incompetence, and she resigned!

What I DID find out is that the Hospital in Blackpool where I had first seen a Gynae had also LIED to me. I was not offered a diagnostic lap until 2011, and until then I was told that there was "no obvious reason" for all my symptoms. The Gynae kept trying to fob me off, telling me it was unexplained "menorrhagia", and forcing me to use the Mirena (which I did NOT want). I tried this and it didn't work anyway! The doctors got my diagnosis wrong at least three times! First I was told I had IBS, then that I couldn't conceive because of "stress", and then I was incorrectly diagnosed with Polycystic Ovaries because my Gynae (who was rubbish!) saw cysts on my ovaries during an Ultrasound! All this dragged on and on until I finally got my lap, which showed I had Endo. Even then, the Hospital got it wrong. They failed to remove all the Endo, and discharged me without follow-up. After I demanded to see my medical records, I found out that there were 2 reports dating back to 2008 in which the doctors I had seen at the time suggested I had Endo. However, the Gynae who was treating me had either refused to agree with the reports, or had simply not even looked at them!

As you can imagine - none of this inspired my faith in medics, or in the Hospital I was being treated at. I then looked up BSGE centres, and demanded referral. I have had to have 3 more laps to remove Endo, and STILL have symptoms. At NO time has it been fully explained to me exactly WHERE my Endo was, although I do know now that it was DEEP INFILTRATING in my Utero-Sacral ligaments. It seems also to have been around the POD area and bowel. I HAVE tried asking direct questions and the doctors are nothing but evasive. Following my most recent MRI scan, they were again devious. It's like they say one thing and mean another. What they told me was this...

"The MRI did not show up any DEEP Endo. However, we can maybe offer another lap if you want one. But we think your pain is due to your damaged hip".

Yeah! Right! So... you reckon the MRI did not show deep Endo. So, maybe that isn't present! BUT... WHY offer another lap if you are so certain my pain is NOT to do with Endo? I reckon the TRUTH is because you KNOW that Endo does NOT always show up on scans... AND I still have symptoms! Whilst my hip may cause some pain - it WILL NOT cause BOWEL SYMPTOMS which I still have.

My feeling is that I have been lied to all along. I know that Blackpool did the first surgery wrong, and left Deep Infiltrating Endo under a load of scarring that they caused due to carrying out surgery that they were not competent to do. I suspect they also did the damage to my hip because I never had that pain BEFORE the surgery, and because AFTER their surgery I ended up at A&E THREE times in excruciating pain (in my HIP area)! each time, they refused to mention Endo and said it was "muscle pain"! It was the BSGE centre I went to later that confirmed Blackpool had missed some Endo (including deep Endo) during surgery and had done damage including bad scarring. However, because I was discharged from Blackpool with NO follow up, I never knew just where they HAD found and removed Endo. The BSGE centre asked Blackpool for my notes on my behalf SEVERAL times but Blackpool NEVER sent them. As a result, I have not been able to find out correctly what went on, and the BSGE specialist ended up working "blind" (poor guy!). These same notes were the ones that were MISSING when I asked to see my records at the G.P. surgery!

I am so sorry for this long reply, and if it sounds complicated. I guess what I am trying to say is that I have felt all along that Blackpool made a big error and did damage during my first surgery, that they have since been trying to cover up. This is the reason I believe my notes have not been provided. I also believe that it is why every time I now see my G.P. or visit the Hospital in Blackpool, even for non-Endo related treatment, they remain evasive, defensive and unpleasant towards me. I would just LOVE to clear all this matter up, but my feeling is that since my first Endo surgery went so badly wrong, Blackpool have had something to hide.

HOW do you go about clearing a mess like this up?