Due to have TPPE but my endo too small? Chronic lethargy/lack of mental focus is my only symptom right now. Shld I have radical surgery?

I was due to have total pelvic peritoneum excision for endo Last Friday. When the doc looked inside he found such as small amount of endo he wasn’t sure whether to do such a radical operation, so he didn’t and sent off my tissue for biopsy. This came back today confirming it was endo, including endo cyst on my ovary, but he thought removing my entire peritoneum was too radical an approach given how little I have.

I have posted before saying my main symptom is not pain (I can handle what pain I get) as much as the chronic lethargy and in particular complete lack of focus/concentration so I am no longer able to work. I have had lots of blood tests all come back fine so it seems the endo is causing this. Can anyone give me advice as to what to do – should I have this radical surgery or is there another way I can treat these side affects for the moment – such as with drugs given to ADHD patients or anti-depressants to improve my concentration so I can raise my quality of life and work again?

I would really value some advice - I don't know what to do. I worry if I have this major surgery, as I am clearly so sensitive to so small amount of endo, there is the good chance it will come back in a few years somewhere else and I will be back to where I am now re lethargy, lack of concentration and inability to work.

22 Replies

  • Hi tiger, do you still have the choice whether you can have it or not? The thing I am confused about is if you only have a little bit of endo, I was under the impression Mr T said he does TPE to remove seen and 'unseen' endo.... Does this mean he believes endo isn't microscopic or only can be 'seen'? But personally any sign of endo to me deserves TPE and that should go for all of us. X

  • Thanks - yes that is what I think too. He does sound very confusing as yes he says it is seen and unseen; and his technique removes both. I think he is confused as I am not complaining so much about pain like everyone else, just this chronic lethargy and mental fog.

  • I recently started taking Ritalin for ADHD and -- wow! It helps me a lot with focus, which is huge. But there is another great thing: unexpectedly: my legs don't hurt anymore! Though I have never been officially diagnosed with Endo, I now think I must have had it, because since my early teens and throughout my entire adult life I experienced horrible burning pain in my lower left abdomen and thighs during my periods. I have also always had legs that just generally ached a lot almost every day. These conditions really drained me of energy and vitality. Also, throughout my life I have had lots of brain fog and trouble concentrating, and consequently I have felt forced to settle for low paying part-time jobs that allow me flexibility to take time off. Till now, this has been the only way I have been able to hold a job. But since starting the Ritalin, I am amazed at what I have been able to get done in a short time! I never dreamed that the ADHD medicine would help me with the pain in my legs. But it did, and what a difference! I have energy now to move around and actively attend to things. I'm writing to encourage you to consult with an ADHD specialist and give the medication a try. I hope this helps and that you find your way to feeling wonderful soon!

  • oh that's great news thank you! I'm not sure if they will give it to me, as I don't have ADHD, but it's worth a go - thanks for sharing!

  • You could have CFS/me.I have both and believe the endometriosis caused chronic stress and adrenal fatigue -years of pain,drugs,pills,operations.I think my body just had enough.Check out CFS and see if any of your symptoms match.CFS has no test -it is aprocess of eliminating other conditions eg thyroid.Thyroid is also very much linked with endo?Both CFS and hypothyroidism have same symptoms of chronic fatigue,brain fog -if this hasn't been suggested I would get checked out for this first but getting any amount of endo removed will help in the long run.

    Pain levels with endo often don't match up -you can be completely tied up with endo and not know( my sis in law had no pain at all,no period issues but it was discovered via fertility tests.Others can have a tiny amount and extreme pain.But a top endo specialist should know this?

    I am unsure re the radical surgery,but those who have had it certainly seem to feel it is the best possible way to rid us of endo -seen or unseen.In the end its your decision but hope others can help you decide

  • Thanks Daffodil - very sane advice. Yes I have had all of those tests and everything comes back normal. I think I will have to have to op. And yes the surgeon knows all this I don't know why he is beng so confusing...especially a top one like that. Thanks again I appreciate your reply xx

  • Tiger, tbh I would go for the lap. Surely it is easier and makes sense to do TPE on anyone with even just one tiny bit of endo. Will be better off in the long run. X

  • You shouldn't take ADHD meds if you don't have it!

    It's stupid idea. No one should be recommending them either.

    As a parent of a

    Child with the condition I can

    See how it helps him with concentration & calmness & less hypo!

    But certainly they are controlled drugs & should not be taken lightly!

    In people with ADHD thy calm

    Them in people without ADHD they will make you hypo, like speed.

    It will help you focus yes but are illegal let alone highly addictive.

    Thy certainly will not help your endo!

    And yes I have stage 3 endo have tried all sorts myself & the fatigue is an awful side effect but talking about taking drugs unnecessarily is not right.

  • I can't see here that I replied to your email. If not then just wanted to say thanks for your response it was most helpful and I think you're right I shld not be taking these drugs without having ADHD. Best of luck in dealing with your own fatigue. Thanks again

  • Hi Tiger,

    That does seem odd. Also, did he remove anything, even the cyst? Most frustrating.

    Did you get a full nutritional profile done at all? Doctors are mostly very lacking in knowledge of nutrition. They are not taught very much when training. Many nutritional deficiencies can cause fatigue and brain fog among a very long list of symptoms. Also gluten can cause brain fog and many people notice an improvement when they cut out gluten. Gluten is also sometimes a problem with endo. x

  • Thanks Brownlow - yes had all test done under the sun but everything normal. He did remove the endo cyst to test it. I'm starting to feel slightly better, which cld be due to removing the cyst, so perhaps I can delay the full op for a while yet we'll see....tis very annoying tho - had he have done the op as originally agreed I wld be completely better now. Hope all ok with you? x

  • I had total radical excision with mr T in elland. I had an previous history of endometrioma but other than this my endo was very minimal. It was a big decision but due to pain I decided to go ahead. The surgery is very invasive (although if you are with Mr T you are in good hands). At first I thought oh my god what have I done. Every day though I am feeling better. It's too early to say if my energy levels have improved because I am still taking a cocktail of drugs. This surgery could also create more pain due to possible adhesions. Mr T does his best to prevent this but there is no guarantees. I think you should make a decision on how much your symptoms impact your quality of life and how can you be sure this is endo? You could end up having a major op which leaves you in more discomfort when it may not solve the route of your problems. Autoimmune issues, dietary intolerances, hormonal imbalances, stress from deciding what to do can all lead to fatigue! Blood tests don't explore every possibility.

    I don't regret having the surgery but so many things can go wrong you must make sure the benefits outweigh the risks!

    Best wishes x

  • Such sensible words thank you! Exactly my thoughts too. Very interested to learn that you opted for this even though your endo was minimal too - of course it's the way the disease impacts your life not how much of it you have that's important. I too am concerned re risk of adhesions - although Mr T says there are none - just a case of balancing how ill you feel now vs the risk of further complication. Although the endo will only grow - so in that respect as I'll have to have the op at some point anyway may as well have it before the endo spreads further (e.g. I'm partic concerned about this spreading to uterous wall muscles given how difficult this is to treat and the impact this has on your ability to carry a pregnancy to full term). Wishing you a successful recovery x

  • I totally know your confusion. I think I made the decision on the basis of a few things:

    1) pain during sex which was a strain for my husband and I

    2) lower back pain which was impairing my ability to exercise

    3) deep cramping and abnormal bleeding during menstruation which got worse every month

    4) hair loss due to pcos which I am sure is a complication of hormonal imbalance

    5) fatigue before during and after menses.

    6) infertility for 2 years

    It took me a lot of time to make the decision. In the end, I decided to take the gamble. My pain was too cyclic to not be due to endo. When I had the surgery it was found on my uterosacral ligaments, bladder and peritoneum. It was in the early stages but explained my symptoms perfectly!

    Mr T told me that he has low post operative complications...but he does have some. When we went through the consent forms I began to get scared! He is a confident surgeon for good reason but he can't guarantee anything.

    Adhesions are the bodies natural way of healing and my ovaries are currently suspended to prevent them. A recent paper has been published to suggest that ovarian suspension is not always successful. Mr T suspends them for quite a long time which might make a difference but there is no guarantee. I am not sure how long you have been trying for pregnancy ( if at all) but you might want to give yourself a little more time while your endo is minimal and if you have no luck by the end of the year make your decision then. Some people's endometriosis doesn't progress nor reoccur.

    I can't recommend it yet but I will keep you posted. I think the decision would be really easy for you if you were really struggling with pain or infertility. Even mild endo can cause horrible symptoms.

  • Thanks for your reply, and I can second almost all your symptoms. I did not realise ovarian suspension is not always successful. I think you're right I will try for pregnancy and then if no luck have the surgery. Do keep me posted on your progress it's great to hear from people in a similar situation! All the best x

  • Thank you. Fingers crossed I recover well and I can come back on here and sing all praises! I do think Mr T is amazing though. His knowledge, experience, bedside manner, confidence, surgical skills speak volumes. I would recommend him to anyone after experiencing a whole host of dodgy gynaes in the past!

    Regarding the adhesions...It is a very recent study and they only suspended for 36h. It's worth keeping in mind though that there is no study to definitely prove ovarian suspension makes a significant difference. Here is the link if you are interested :) ncbi.nlm.nih.gov/m/pubmed/2...

  • Cheers for the link. I agree re Mr T - still find it hard to believe he is one of the very few surgeons globally who practices this method, despite all the evidence re poor success rate of lazor / patchwork excision - and that the nhs continue to advocate for repeat courses of lazor surgery or horrific hormone drugs. Shame also about the price tag which prevents most women from seeking his help. Count ourselves lucky we have found him and are able to borrow the money.

  • Yes I agree! It is totally appalling how misguided the information can be unless you really take strides to challenge your doctors and research the condition.

    We are going to have ivf when I am recovered and I am already coming across ivf specialists who don't have a clue! It really irritates me when they make ignorant comments. I must be the worst patient to have on their books!

  • Good luck with the IVF. I've heard it can badly exacerbate existing endo. I assume because Mr T has removed your entire peritoneum having strong injections of hormones (estrogen?) won't risk your endo coming back elsewhere? Maybe you won't need IVF if he removes the affected areas...

  • I've heard this too but we have found out hubby has big issues too! Typical x

  • Why is everything always twice as hard! Best of luck anyway and recover well xx

  • Who s mr t?

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