Pain management clinic, hysterectomy or private MRI?

[Katt]

Really could do with some advice, experience and words of wisdom. Just to give a brief history. I have suffered from endo symptoms for about 4 years now and have had 2 laps that have both come back negative. I have been told that its not endo or adenomyosis or any other "serious" condition so I need to just focus on trying to reduce the symptoms. Over the years I have tried prostap, mirena and combined pill which have lead to various health problems. A few months ago my consultant said that I should try cerazette and I asked to be referred to the pain management clinic and have an MRI to look for adenomyosis. She refused to give me the MRI and told me even if it was then the only option was a hysterectomy. I am still waiting to hear from the pain clinic but over the past few weeks have been feeling really unwell. My GP run some tests and told me that the cerazette which actually really seemed to help reduce my pains has induced lupus and I have been told to stop taking it immediately. I am now so unsure where to go now. Should I just have a hysterectomy? Will the pain management clinic when I ever hear from them really be able to help? Should I look into a private MRI or accept what cons has said? I don't think I have many medical options left and can't face this for next 10-15 years. Sorry for the long post but feeling pretty low and can't see any light at the end of the tunnel at the moment.

Katt x

[Mirmir]

Hi Katt,

Sorry to hear that you've been having such a rough time. Lupus is not good at all. I have a long history with endo. I had my right ovary removed 8 years ago and have just been diagnosed with deep infiltrating endo. I have had trouble with diagnosis in the past too, but have known for a long time that I have had something 'up there' that wasn't detected over the past 5 years, despite 2 examinations from senior consultants and a number of ultrasounds. In that time I have had a baby and a very complicated pregnancy/birth. I know that the deep endo was there before the pregnancy because of the type of pain that I was getting prior to conceiving, which has just progressively gotten worse since I had my son, and is now chronic. Anyway, it was going private that was the breakthrough for me recently. The consultant referred me for an MRI on the NHS almost straight away, although I would have been willing to pay for it myself if needed it (even though I really don't have the money for it). To be fair, he felt a mass on examination but I think you can request one during a private meeting with a consultant - you would need to start with the consultation anyway I think. Incidentally, I asked my GP about MRI ages ago because I knew it could be the answer. I didn't bother asking the last consultant that I had (stupid woman) because she didn't believe that I had endo, in the slightest.

My strong advice to you would be to go private on this occasion, because you seem to have exhausted the other medical options. You will not regret it. The MRI should show up adeno if you do have it.

On another note, I am almost certain that herbs and dietary changes really have made a difference to my endo. Twice now it has flared up to the point that I was in pain everyday and struggling to look after my son. Twice I managed to bring it under control to a greater or lesser degree by using herbs and eating an anti-inflammatory diet - low-gluten; reduced read-meat; low caffeine; low sugar; low dairy, organic mainly - particularly meat-wise. This time round it has not come under control so well but I assume that the nodule that I have has gotten to a point now where it is so invasive it just needs to be removed and that is the only option. It sounds hard to do the diet but if you know anything about food and how to cook it is do-able. And it you start to feel better, you will be more motivated to stick to it at least some of the time. Seriously, try herbs. And other supplements. High dose turmeric (curcumin) is anti-inflammatory. So are fish oils. Those two things would be a good place to start but I would suggest you also need something to work on the hormonal side of things. The herbs can do similar things to pills such as Cerazette, but are tailored to your needs and are much gentler (and obviously would not stop your periods etc).

You are having chronic problems and non-medical routes in conjunction with scans and proper diagnosis etc can really help some people to regain their control over their health.

Good luck. xx

PS I am not a flakey new-aged hippy, I am an educated person with a belief in exploring and weighing up the risks/benefits of all options! :o)

[Mirmir]

PS if you are paying for private go for the best possible - it has to be an endo specialist!! You also need to check that the person interpreting the MRI is specifically a radiologist with experience of looking for endo and adeno. :o)

[Katt]

Thanks Mirmir, you have made some really good suggestions. I have thought about looking into the diet side of things but I've always talked myself out of it as its hard enough feeding my family with food they all like let alone me eating different too. But looking at it I feel I'm running out of options. I'm hoping it is drug induced lupus so the theory is if I stop taking the drug the symptoms go away, but then I know the endo symptoms will come back worse.

Hope you are doing ok x

Katt x

[Juleyanne]

I am also in a dilemma of what to do next, hysterectomy or live with the pain and symptoms for fear of more adhesions relating to severe endo. I am now menopausal and not sure which way to turn next. One of my Gps suggested seeing an endo adhesion specialist gyne initially privately. It would cost approximately £200 for a one off appointment and not only do you get to discuss your options with an expert in this field but you have an appointment which gives you more time. You can then be referred back on to the NHS probably with that consultant which in theory speeds up treatment options and your more likely to get a surgeon specialized in endo and adhesion complications.

[hayls in reply to Juleyanne]

Hi Julieanne

Just read a couple of your posts and I fully 100% recommend getting a private consultation, even if you then need to go back on to Nhs for any op. I'm very lucky that I have private medical insurance so only pay the income tax for the benefit, the excess and any charges which exceed my insurance companies schedule of charges. Even with this I started off with an Nhs consultation as there is only a short waiting list in my area and knowing that I could then instantly get a second opinion on my private medical insurance - which is exactly what I did as ended up making a private appointment from my car immediately after my Nhs appointment! A lot of the specialist consultants at the accreditated endo centres also work privately, if you choose a centre based at an Nhs hospital then it should hopefully be quite smooth to switch back. I see my consultants privately at a nuffield hospital (endo specialist and colorectal surgeon) and they are also the directors of an accredited endo centre at an Nhs hospital. They are very very good, I have had just had 2 major ops with them and adhesions are one of my big problems, where are you located as happy to send you their details by private message. I travel over 2 hrs to see them and its been worth it.