How to go to battle with Doctors/Understanding this Illness

[natnoo]

I had my first lap in January and they found only a small amount of endometriosis, however the small amount that they found was very inflamed and was giving me a lot of grief. There was also mention of chocolate cysts.

My symptoms included horrendous IBS, lower abdominal pain, fatigue, sensitivity to light, migraines, an obsession with wanting to eat sugary things, low libido, dizziness, lethargy, Sciatica down my right side and a pulling near pubic bone also on my right side which stopped me in my tracks from walking.

I have been on the pill (Cerazette) for around 7 months now but am still getting symptoms so I think that it has come back. My first question is this... I know that people's symptoms flair up sometimes around the time of their period but if you are on the pill, back to back, then is there still a pattern to this?

My second question involves what I should ask my doctor to do next! I am getting increasingly frustrated when I go to the doctors as they are saying that I have been mildy depressed - I would not argue with this as at times I have been, however they seemed happy to just pigeon-hole me into this box and not look at WHY I have been struggling mentally and this is because of the pain I have been in. I feel like they are saying that it's all in my head when it's obviously not.They are saying that the endo can't have come back this quick but I don't know how they can be this sure. I am having massive problems with my lower back and have been in constant pain with this, I can feel popping in my stomach and am getting abdominal pain again along with headaches. They seem reluctant to investigate further as they don't think that it can come back so soon. I have also been told point blank by my doctor that it is impossible for endo to cause sciatica/get into the sciatic nerve and have been referred for physiotherapy on my back/leg/sciatica Should also add that although I mentioned this in June of last year I have only just got a physio appointment for September of this year!! The spinal consultant asked me a couple of questions and didn't even look at my back. I was clearly the last appointment of the day and was in and out in about 5 minutes. I mentioned that I suffered with endometriosis but he didn't seem interested. I wish I had been more forceful now. I have been reading other posts on here which has been a great help to me and I know that other people with endo suffer with bad back pain and sciatica so I find this very frustrating when the doctors don't listen to their patients. I think everything is linked as I have done from having nothing wrong with me to having everything wrong with me. The glands are always up in my neck and I pick up bugs easily too. I am now getting pain in my bladder and when I go to the toilet I can only get a little bit out when I know there is more to come so I now think I have a infection as well. Possibly a kidney infection as when I cough or laugh am getting a pain around this area,. I really don't know how to get the doctor to listen or where to go next with managing this illness. If you had endo on the bladder or any other area then would this have been picked up when they did my first laproscapy and removed the endo from my right ovary or does each area have to be investigated by a separate/specialist department in the hospital? There is much more that I could write but I'm trying to keep it short. I am just so frustrated and confused with what to do next and know that I need to be more bold when dealing with the doctors but I don't know what to ask for. Thank you for listening and thank you in advance for any replies that I may get to this post.

[Impatient]

Go back to your doctor's armed with the medical literature to prove anything and everything he claims is not true. If he still doesn't listen then switch GP. You will be banging you head against a brick wall otherwise.

If he is prepared to listen in light of a few print outs, then take control of the situation and give the name of an accredited endo centre that you want to be referred to.

Referrals are done reluctantly because GPs lose money but you have a right to see specialists and get treatment where possible.

The following paragraph from centre for endometriosis care website states;

The first case of biopsy-confirmed sciatic endometriosis was described by Denton & Sherill in 1955.3 Since then, many additional cases have appeared in the literature. Symptoms that may lead to suspicion of sciatic disease may be predominantly left-sided, though infiltration of the pelvic wall and somatic nerves causing severe neuropathic symptoms due to endometriosis infiltrating the right sciatic nerve has also been well-documented.4

also visit this link to published research:

ncbi.nlm.nih.gov/pubmed/219...

Ceccaroni, Clarizia, Cosma, Pesci, Pontrelli, Minelli. Cyclic sciatica in a patient with deep monolateral endometriosis infiltrating the right sciatic nerve. J Spinal Disord Tech. 2011 Oct;24(7):474-8

and here's a very useful one too

pelvicpain.org.uk/index.php...

Anyone with deep infiltrating endo needs referring to an accredited endo centre, that is why they were set up.

I would say that it is most unlikely that you are suffering new endo - in that respect I agree with your GP, but it is most likely that the surgery you had in January was insufficient - leaving existing endo behind. a first lap doesn't treat deep infiltrating endo. To get that seen to - you need to be referred to the right surgeons to get the work done.

a standard fertility gynaecologist is not trained or experienced enough in pelvic surgery for advanced endo.

And get battling that UTI as soon as possible. Please look up on this forum Ecoli biofilm in the green bar search box.

It shouldn't have to be like this, but when you do get a dinosaur GP you either have to educate them, shame them in to doing what they are supposed to be doing or ditch them and get someone who can help and support you.

Very Best of Luck!!

[emaweegirl]

I'm on cerazette too and am wondering the same thing as to whether monthly pain can still occur without a period, as it does for me.

[wp22]

Yes you can get sciatical nerve pain from endometriosis.... Lots of ladies get it and lower back pain too! Doctors really do not know their stuff do they.... I have/having such a battle still trying to get the type of operation I want (will be my 5th in 2half years) as after 4 ops still suffering. I did have around 7 weeks pain free after my last op but now the pain is back and nearly as bad as it was before, sadly.... Personally I wouldn't waste any more time on this useless GP, as impatient said you are banging your head against a brick wall. I would go see another GP asap and insist whilst you are in his room he refer you to a proper ENDO GYNAE (not a regular gynea as they don't know what to look for when it comes to endo) with a decent reputation. Good luck. X

[Yazza]

I'm at the doctors now for constant pain lower back and pelvic pain it's getting me really depressed as I can see a way out I'll let you know how it goes good luck to you all and it's nice to know your not alone . X

[Scooteeder]

OMG! How I detest this sort of attitude from Doctors! It irritates the heck out of me! SO PATRONIZING!

Right... now I have got that out of the way, I'd like to try and assist, if I can...

First of all, Endo CAN recur. There are numerous ladies on this Forum who have had SEVERAL lap surgeries because of recurrent symptoms. Sometimes their Endo has been "clear" for a while, other times, it has come back really quickly! I say "come back" - this is probably not strictly correct. It is more likely that when a woman has recurrent symptoms, that return after surgery, her surgery was ineffective. Possibly a tiny patch of Endo was not spotted, and was therefore left inside her body after the lap - to continue growing and causing problems. As you may have read, Endo and pain are peculiar phenomena, and even a small amount of Endo can cause pain for some people (perhaps it is to do with individual tolerance to pain?). So, there is nothing to suggest that you might not have a small amount of Endo, but feel pain.

For examples of how quickly symptoms can recur after surgery, just look at some of the women's posts on this Forum. There are people who have had numerous laps, some VERY close together. I have had 4 laps to date - my first in April 2011, my second December 2011, my third in about May/June 2012, and my most recent March 2014. Perhaps that gives you an idea of how quickly MY symptoms returned on different occasions. Other women will be different again; but I am sure that many on this site show evidence of having had more than one lap, for recurrent symptoms.

In terms of your symptoms, YOU are living with them, so I would assume that you know your own body well enough to have an idea when something is not right. Endo CAN cause sciatic pain, and Endo has been known to grow on the sciatic nerve (I think Impatient has provided a good link to an article on this). Endo CAN also cause back pain, and abdominal pain, as well as bladder and bowel symptoms. For more info on Endo symptoms, according to where Endo is located in the body, see...

endo-resolved.com/symptoms....

In terms of the other things you say, then it's difficult, as women with Endo often have to be VERY persistent in trying to get accurate diagnoses and effective treatment. NOBODY should have to fight to get good medical care - but it seems that all too often, women with Endo DO have to! Perhaps THAT is why it takes on average 7 years before a woman even gets a diagnosis? Some Doctors just DO NOT seem to listen, others get mixed up and make inaccurate diagnoses, yet more seem to "fob women off" and settle for "catch all diagnoses" such as stress, anxiety or depression (which seem to require very little investigation!).

Even if YOU do feel somewhat depressed at times, that does NOT rule out having Endo. A person can have more than one illness simultaneously (it's called co-morbidity). Besides, many people with chronic illnesses and pain find that they feel "low". This may be due to the frustration of living with ongoing symptoms, or of feeling that there are things their illness prevents them doing. Pain can be fatiguing, and fatigue again stops you doing things, leading to a "vicious cycle" that can again make you feel miserable and "low". However, in cases such as this, depression is NOT the only, or main, problem. The fact is that, were the other issues of pain, fatigue, chronic illness etc. to be properly addressed, you might well feel less miserable and depressed!

I cannot say much about whether each symptom/issue has to be addressed separately or not... I am in much the same position! Personally (only MY opinion, so who knows if it's right?!) I feel that one of the biggest problems with "traditional" health care is that it is NOT holistic in any way - instead, there are "specialisms", with different Doctors specialising in particular illnesses or injuries. Thus, you end up seeing DIFFERENT people for different symptoms, even though YOU know your symptoms may be linked. I really don't know what the answer is to this! Personally, I think that health care needs to see a person as a WHOLE - i.e. physical, mental, and emotional all linked, and lifestyle factors, too... but the reality is different!

I guess you just have to STICK AT IT. Do your research, and be prepared to stand your ground. Impatient has given some very good advice - ask to be referred to an Accredited Endo Specialist, see link...

bsge.org.uk/ec-BSGE-accredi...

If your G.P. continues to be a problem, either ask to see somebody else within the Practice (if there is more than one G.P.) or consider changing Practices altogether. Go to any appointments well-prepared. Try keeping a SYMPTOM DIARY in which you record symptoms, what they are, when they occur, etc. Jot down questions before you go to appointments, and don't be afraid to ask them when there - take notes, and ask for copies of any letters/reports etc. that your Doctor or Consultant writes. If in doubt, ask to see your full medical records. If you feel nervous about appointments, take somebody with you for moral support (they are also a useful extra set of ears!).

I'm sorry for such a long response, but I do hope there is something here of use to you. Whatever the case, I truly wish you good luck, and hope that you can get something sorted out. This is YOUR body and YOUR health - so it IS IMPORTANT TO YOU. Remember that there are lots of ladies on this Forum who understand, and are here to give advice and just to listen and give support if you want...

Best wishes,

Elaine. x

[natnoo]

Hi Everyone,

I just wanted to say a huge thank you for all of your responses. I went back to the doctor armed with the information and feeling strong enough to get my point across and get things moving in the right direction. It is a long road ahead but your info really helped me and have helped me to go to battle with the GPs!

Please accept my sincerest apologies for the late reply and lack of thanks until now but I am quite new to this and was unable to find my original post!

Thank you all once again, this really is a great place to get help and to help others and it helps so many women (and a few men looking to get help to cope with the illness in their partners also)

Nat