First of all I'm very sorry that you're suffering from such a difficult condition. I hope you will forgive me for asking a pre-emptive question when you're already going through this.
I have endometriosis in my inguinal area which is causing me to have a lump in my groin, mild pain and restricted movement. I'm on the waiting list to have it removed.
When my surgeon talked about this he said one lymph gland would be removed although I don't quite understand how he'd know this based on only seeing an ultrasound. I told him the only knowledge id had of this was of breast cancer sufferers and asked him if I'd be at risk of lymphodema. He said no. However reading on the net it seems that this is a possibility with any gland removal? Is this correct?
I haven't found any statistics on the risks of lymphodema with groin gland removal, does anybody have any links at all?
Many thanks,
Marello
Written by
WanderingStar
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I think you would find it helpful to contact the Lymphoedema Support Network. They have a website and telephone help line. I think you would benefit from phoning them.
Personally I do suspect that lymph node/gland removal will put you are risk of developing lymphoedema. However lymphoedema affects people in different ways and many of us manage our condition without it affecting our day to day living much. I have been affected since childhood and reckon it hasn't stopped me doing anything I have wanted to do.
I'm not a doctor but I would have thought the answer was yes, you are at risk. I had lymph nodes removed from my groin, however I also had 3 surgeries and radiotherapy which all culminated in lymphodema. Also everyone is different, some will be more/less affected by the removal of a node. Agree with the comment below speak to LSN
I am not a doctor either, but like above mentioned, lymphedema can be triggered by a big or a minor event. Some people have a bigger lymphatic system then others. It is all going well until some intervention shows that your lymphatic system is less developed. For me, for example the lymphedema was triggered by a small injury, causing normal swelling. However this was overwhelming for my apparently poorly developed system. The swelling never went away ... lymphedema. I am not saying you will have this, cus my story is rare. But I don't think doctors can say you don't have any risk. This is mostly cus they don't know in what high rate le occurs (or they don't want to know). If the doctor tells you there is a tiny tiny risk, you can be careful. And if there (hopefully not) should be minor signs, you can quickly act. When you get help in the very beginning, it is likely to go away again.
That is why doctors should give you proper information! Take care!
From my experience, I had all of my lymph nodes removed from my right groin and some removed from my left groin. My right leg swelled, my left leg didn't.
Yes there is a risk of lymphoedema whenever a lymph node is removed, I think the greater risk is associated with if the sentinel lymph nodes are removed. These are the nodes that do the majority of the work and are found in key places in the lymphatic system such as the groins and the armpits. These cannot be detected with an ultrasound, but can be through other scans such as nuclear medicine.
But ultimately if a node needs to be removed, they will remove it and there is nothing you can do to mitigate or prevent lymphoedema even if you do know you are at risk of lymphoedema, but you are not alone.
My (right leg) lymphedema was caused by radiation therapy following cancer surgery. However, I agree with the replies below, that anything involving lymph nodes can trigger lymphedema. I would ask your physician why a lymph node must be removed, and ask if there is any way the lump can be removed without removing the lymph node. God bless you that either way, you will not develop lymphedema.
I had lymph nodes removed from both sides after cervical cancer surgery. I developed Lymphoedema two years later but only my right leg. I can feel where the blockage is as my groin has a slightly firmer area on the right hand side. Lymphoedema was never mentioned to me before or after surgery or throughout the two years afterwards. This was despite having check ups every three months for the first year and then every six for the second year!!! This makes me angry as I would have known what the symptoms were and sought help sooner!
Though I think attitudes are changing, lymphoedema has always been an allowable side effect of surgery. Because one may not suffer from it and like Rainbow said it can come on years later, surgeons have previously ignored the consequences. Now, certainly with breast cancer patients, is it not uncommon for surgeons on removing lymph nodes, they also perform the bypass surgery to keep the lymph system functioning.
Surgeons in the UK are learning about lymphoedema and the treatment of it is evolving at an incredible rate.
I am consultant plastic surgeon with an interest in lymphoedema.
I"m sorry to hear you have a problem with a groin node. You are right that there is a risk of developing lymphoedema following removal of just one node. It is low however but depends on which node was removed and what damage is caused during surgery to the surround lymphatic channels. The risk is higher the more nodes that are removed and highest if you have a complete node clearance and post op radiotherapy that can happen if cancer is involved.
Following surgery you can keep an eye out for swelling of the limb and treat it early. We are offering a lymphoedema screening service for patients who are high risk or very worried by their own risk. This involves screening with ICG lymphography. There is evidence that we can pick up very early changes within the lymphatics before you develop any swelling of the limb. The advantage is that you can then start early treatment with either compression or surgery to try and prevent any swelling ever occurring and bypassing several years of trying to get a diagnosis and treatment.
Hope this helps and good luck with your operation.
Hi Marello, I am sorry to hear this. I also am an endometriosis sufferer and developed lymphoedema post complex surgery (bowel/ bladder resections) for stage 4 endo 9 years ago. To this day, no one has been able to explain why I have lymphoedema in one leg, which has been a cause of much frustration! Lymphoedema services are woefully lacking on the NHS too (ie fairly non existent) in my experience. I sympathise as it can be hard to get effective treatment for endometriosis alone. Good luck with your surgery and keep asking questions! Take care x
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