Radical surgery for endometriosis: Patient story


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What does radical endometriosis surgery entail, and when is it the right course of action? We speak to a specialist surgeon as well as one of his patients, who has recently undergone radical surgery to treat her stage 4 deep infiltrating endometriosis.

Mr Chellappah Gnanachandran is a Northampton-based consultant gynaecologist specialising in endometriosis, adenomyosis and fibroids. He practices at BMI Three Shires Hospital.

Mr Gnanachandran’s patient wants to share her story in case it might help other women in the same situation, but she wishes to remain anonymous, so we’ve called her simply ‘K’.

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We speak to Mr Chellappah Gnanachandran, a consultant gynaecologist and endometriosis specialist, about the pros and cons of radical surgery for endometriosis.

What is radical surgery for endometriosis?

Radical endometriosis surgery, also referred to as complete endometriosis surgery, is the removal of the womb (hysterectomy) and ovaries (oophorectomy) to treat advanced endometriosis. It is done at the choice of the patient, if other treatments did not help.

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During radical keyhole surgery for endometriosis, we also remove other endometiotic deposits from the pelvis. It is an effective treatment in most patients but comes with significant risks and side effects. These can include complications during surgery, such as bladder, bowel or ureter damage. The procedure is irreversible and one of the most significant results is sterility.

A hysterectomy can be performed with or without removing the ovaries. Sometimes both ovaries will be removed (bilateral oophorectomy) and sometimes only one (unilateral oophorectomy). If one or both ovaries are left in place, the chance of endometriosis returning is higher.1

This is major surgery and will not be recommended for everyone. It is most commonly recommended for people with advanced endometriosis who do not wish to conceive in the future.

Who can benefit from radical endometriosis surgery?

Whether or not a patient is suited to radical surgery will depend on the severity of their symptoms, the grading or extent of their endometriosis, and the patient’s desires.

When it comes to surgery for endometriosis, the main options are:

  • A diagnostic laparoscopy involving the removal of endometriosis (often called conservative surgery)
  • More complex surgery, if the endometriosis is more advanced, which might involve removing endometrial tissue from the bowel or other organs
  • Radical surgery to remove the womb and/or ovaries in the hope of eliminating all endometriosis

In my practice, all patients will have counselling prior to surgery, making sure they clearly understand both the risks and the benefits. The more complex the surgery, the more important this is.

A hysterectomy or oophorectomy is a significant procedure leading to sterility. You would need to think, is my family complete? Am I certain I do not hope to conceive in the future?

What can I expect from radical endometriosis surgery?

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During any surgical treatment for endometriosis, We aim to remove as much of the endometriosis tissue as possible using the methods agreed to.

So, we would aim to remove all evidence of the condition, especially all deep pelvic endometriotic spots, and uterosacral ligament deep infiltrating endometriosis.

In my practice, I favour doing this during one surgical procedure rather than using two stages, which some endometriosis centres practice. However, I will perform two surgeries if I think that is best for the individual patient.

This two-step surgery will involve first the diagnostic examination and the partial removal of the endometriosis, after which will be a period of medication, before a second procedure to complete the surgery.

Radical endometriosis surgery usually takes 2-2.5 hours, but every case is different and must be treated as such. It is crucial to give the operation enough time and attention, otherwise there is a chance of leaving some endometriosis behind.

What are the outcomes for radical endometriosis surgery?

For most people, surgery will significantly improve symptoms in the long term. But it is not uncommon for pain and nerve-related symptoms to persist for some patients. For others, it may eradicate symptoms and improve their quality of life significantly.

Evidence shows that some people will have a recurrence of pain or other symptoms. This is much more likely if one or both ovaries are preserved.2

We do make every patient aware of this, but we also reassure them that the majority of our patients have massive relief in symptoms after surgery.

Multiple factors affect the outcomes of radical endometriosis surgery. We believe it could be affected by everything from the advancement of the disease, to the surgeon’s skill or the patient’s perception.

Will I need further treatment after the surgery?

This again will depend on the individual circumstances.

For example, if there is any suspicion that there are microscopic areas of endometriosis left, I would recommend hormone replacement therapy (HRT). This both replaces lost hormones and aims to stop the endometriosis returning.

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In other cases, there might be large areas of endometriosis left that could not be removed during surgery. In this instance, the patient might need GnRH treatment and low dose HRT.

In the case of my patient K, who will share her story below, we removed as much of the endometriosis as possible but felt there was a chance of some microscopic areas remaining. So, we decided that the best choice for her was the hormone therapy tibolone, which is similar to combined HRT.

There are some risks and potential side effects of tibolone, but the treatment needs to be bespoke to each patient. Your doctor may recommend something different. It’s about what’s right for you.

What are the risks of radical surgery for endometriosis?

Some radical endometriosis surgery has a higher risk of ureteric injury than a routine laparoscopic hysterectomy. For example, if endometriosis has affected your bowels, you may need further bowel surgery. This will have been explained to you beforehand.

All endometriosis surgeries have the risk of complication, including bowel, bladder or ureters damage and the chance of needing further operations.

Another potential complication is that the pain returns after a few months. There is also the psychological regret of losing the womb and ovaries.

What it’s like to have radical endometriosis surgery: K’s story

K is one of Mr Gnanachandran’s endometriosis patients, who has asked to be anonymised. She has recently undergone radical endometriosis surgery, including a hysterectomy and a bilateral oophorectomy.

She shares her story of symptoms before and after surgery and how this radical treatment has changed her life.

My symptoms before surgery

Ever since they started when I was 12, I suffered from heavy, painful periods. However, in the last six or seven years, things really intensified.

I started getting more irregular and heavier periods than before. With these would come severe pelvic pain, back pain and bowel symptoms.

I was losing so much blood due to heavy periods that I developed anaemia, which left me with breathlessness. I was regularly prescribed iron tablets.

Eventually, the pain and bowel symptoms became intense and had no pattern. Some days were better than others but, as time went by, I noticed that the bad days outnumbered the good.

I felt embarrassed to visit health professionals. This certainly delayed my treatment.”

It started affecting my work and my family life. I reduced my working hours, and at home I couldn’t function like before.

One day I went to my parents’ place with the plan of helping them with something, but I ended up needing them to care for and help me because my symptoms were so bad. That was a wake up call that led me to seek help privately.

It was at this point that I was finally referred to a gynaecologist and officially diagnosed with endometriosis.

The difficult decision to have surgery

Being a medical professional myself, and being a woman, I felt embarrassed to visit health professionals. This certainly delayed my treatment.

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As things became more difficult, I did seek help. A couple of times I was recommended hormonal contraceptive options by my GP.

However, I’ve always been very sensitive to medications and hormones. I experienced severe side effects and couldn’t continue with them.

This was when I started to think that surgery was the only option that might benefit me.

However, I was worried about not being able to get proper post-op care, or not being able to take enough time off, especially with family responsibilities. I also had concerns about post-operative complications.

All these things led me to push myself to the limit and hope I could just live with my symptoms. But eventually I just couldn’t ignore it anymore.

Surgery for advanced infiltrative endometriosis

As I have mentioned, I was referred to an excellent gynaecologist (Mr Gnanachandran) after private investigations indicated the potential of endometriosis.

I was found to have stage 4 deep infiltrating endometriosis, meaning the condition was very advanced and had spread to other organs in my pelvis.

The choice to have radical surgery was a big one, but it was right for me. I had a laparoscopic hysterectomy and a bilateral salpingo-oophorectomy.

The procedure also involved the resection of all endometriotic lesions, a ureterolysis, the separation of my sigmoid colon from my uterus, and the removal of endometriosis from my uterosacral ligament.

It’s important to know that recovery is a journey. You may not feel better all at once.

Life after surgery

The best thing about life after surgery is that I no longer have ‘horrible period’ episodes.

It’s important to know that recovery is a journey. You may not feel better all at once.

Six weeks after surgery, my back pain and pelvic pain had improved significantly and my bowel symptoms had started to get better. But I was a little worried.

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I started getting recurrent cystitis and I felt like my bowels were becoming hypersensitive to most foods. I also experienced different pelvic and lower abdominal pains intermittently, with or without vaginal bleeding (which varied with intensity and may be related to how much work or what kind of work I had been doing).

At this point I wondered whether I had made the right decision. But things have taken a turn for the better and now I’m very relieved that I had surgery.

12 weeks after surgery, I feel like I’ve been on a long journey of healing. Overall, 75-80% of my pain and other troubling symptoms have improved, which I find marvellous.

What advice would you give to people in the same situation?

Don’t be afraid to ask for surgery. My only regret is that I should have requested surgery two or three years ago as it might have made the procedure less complex, giving me a better chance of recovery.

I’d also say, don’t suffer alone with endometriosis. It’s not worth ignoring or delaying. Keep discussing it with your health professional or consultant until you both come to a mutual agreement about your treatment options.

If you do have surgery, be aware that post-op care is crucial. Listen to your body and listen to your surgeon’s advice.


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Sources
1https://www.endometriosis-uk.org/surgery-and-endometriosis
2https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/

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