Chronic Pain, International Women's Day, Women's Health

LLETZ Talk About The Side Effects

A good friend of mine has been on a journey to get a full hysterectomy. I have known her through this entire process and ‘hard’ is not even the word to describe what she has been put through. It started with abnormal cervical screening results and the need to remove those abnormal cells. It included biopsies, multiple trips to hospitals and doctors surgeries, weeks-sometimes-months of waiting to be seen. She endured consistent refusal on a number of occasions to perform a hysterectomy at her request because, despite the fact it would solve her medical problems she “might change her mind and want to have kids one day” according to the doctors. (This is a separate but well-known issue in healthcare for people with a uterus and cervix and honestly, if you knew my friend, you would laugh in the doctors face at this suggestion. Cats? Yes. Kids? F*** no.)

Her journey through this has spanned years but this was prolonged and made far worse when she had a LLETZ procedure. This stands for Large Loop Excision of the Transformation Zone (LLETZ) and is a type of surgery that removes a small part of the cervix. It can be used to treat abnormal cells or early stage cervical cancer, as well as to diagnose cervical cancer. During the procedure a thin wire loop with an electrical current is used to remove the affected area of the cervix. For a more detailed explanation of the before/during/after you can visit Jo’s Cervical Cancer Trust website here.

The side effects of this procedure are often described as short term, lasting for 4 weeks, with descriptions that include the words “some discomfort.” This was not my friends experience nor is this true of 1000s of others who have undergone this procedure. After a short discussion she invited me to an online support group for people who have had a LLETZ procedure and I spent International Women’s Day reading the heartbreaking stories of people with a cervix who have had their lives severely impacted.

A common theme throughout the group is that the possibility of long term effects is widely reported by patients but poorly researched and poorly documented. That doctors have downplayed the extreme side effects they could be left with post-LLETZ, in many cases their doctor has denied that the pain they have is as a result of the procedure, pre-op information and post-op care is lacking. True informed consent of the risks vs benefits is not being met and this is doing people with a cervix a huge disservice.

I asked my friend how I could help and she said that anything to raise awareness of the full range of possible side effects post-LLETZ that can be experienced would be a huge help. After reading stories and scouring the internet for research articles I have a list. This is not intended to scare people out of a LLETZ procedure, it’s incredibly effective at removing all abnormal cells with a reported 90% success rate. The intention is to help prepare patients for all possibilities “just in case”, to help patients know where to access further support if they do experience lasting symptoms, and by reporting the long term side effects it may prompt the medical world to do more research into how these side effects can be managed or avoided.

Disclaimer: I haven not had this procedure, I do not pretend to know how far reaching the side effects are into affecting a persons life post-LLETZ and I hope that this article can do it justice. If you are reading this and have had a LLETZ procedure but feel I have missed something or I’m not painting an accurate picture then please do contact me and I can update the information I’ve provided.

Possible Side Effects After Having A LLETZ Procedure

Bleeding – Patients should be prepared for bleeding to continue for over the 4 weeks period currently suggested. If it does then speak to your GP or consultant to discuss this.

Pelvic Pain – This is anticipated to last for only 1-2 days post-LLETZ but a third of patients reported to be experiencing severe, debilitating pain a long time past this estimate. Osteopaths and physiotherapists are a great source of pelvic pain relief with many specialising in women’s health. Contacting your GP or consultant to make them aware of the pain in case they believe medication can be helpful here is also recommended.

Changes to vaginal dischargeOver half of patients experience changes to vaginal discharge which is expected to take no longer than 4 weeks, but of course can take longer. Keeping your GP or consultant informed past this point will allow them to monitor for any worrying signs. Important! Between about 1 and 14 in 100 people get an infection after LLETZ. Talk to your GP if your vaginal discharge smells bad, or is a yellow or green colour. If there is a chance you have an infection, you will be offered antibiotics. 

Cervical stenosis – The opening of the cervix can narrow or close due to scarring. This can cause partial or full blockage of the passage between the vagina and uterus. Research suggests there is a 2% -14% risk of this happening.

You are more likely to develop cervical stenosis if you have been through menopause, had more than one treatment or had treatment that removes a large area of your cervix. You may not have any symptoms of cervical stenosis. If you have periods, they might become irregular or painful. If you are trying to become pregnant, the sperm may not be able to get to the uterus.

It is important to speak to your GP if you notice any changes because cervical stenosis can sometimes be treated with cervical dilators to help widen the cervix.

Premature birth or early miscarriage – This is often a huge source of fear and can contribute to the psychology side effects, but despite 24% of patients being warned of this potential complication only 2% are likely to experience this difficulty. Again showing that the ability to have children is more broadly emphasised than other side effects such as psychological factors or pain levels.

Anxiety and depressionJo’s Trust found that 71% experienced anxiety and 24% reported depression, however only 6% were made aware they may experience psychological complications. Seeking help for this through family support and talking therapies early is the best course of action.

Post-Traumatic Stress Disorder – Another psychological effect could be PTSD. If the beginning of your procedure is attempted with a local anasthetic it can still be incredibly painful. This could be due to incorrect injection placement, not waiting long enough for the injection to numb the area, not enough

Loss of libido – A decrease in the desire to have sex is sometimes mentioned but the potential for total loss of sex drive is not widely discussed with the further relationship implications and psychological aspects of disassociating their body from being sexual. Talking therapists and sex therapists can both be helpful here

Other symptoms of sexual dysfunction – Such as loss of ability to reach orgasm, pain during penetrative sex, loss of vaginal sensation, vaginal dryness. This can result in deeper feelings of losing ones sense of sexual identity and connection to ones body. Without prior understanding of the risk of this is can be quite scary or confusing at first, and the information online about the link between these symptoms and LLETZ is also severely lacking. Again, speaking to your GP, speaking to talking therapists and psychosexual therapists may help

Incontinence – The bladder and reproductive organs are close in proximity within the human body. As with all interventions around the repodictive organs there is a small risk of bladder damage with poor procedural technique, as well as risk of infection/UTI’s. Any changes to your urinanry habits require a GPs attention.

Vulvodynia – This is persistent, unexplained pain in the vulva. (The vulva is the female genital area including the skin surrounding the opening of the vagina.) This condition is unlikely to get better on it’s own and many of the treatments for it are via presciption only so so seek help from your GP immediately.

Vaginismus – This is the body’s automatic reaction to the fear of some or all types of vaginal penetration where the vagina suddenly tightens up when you try to insert something into it. It can be painful but it can also be treated; usually done by speaking to a psychosexual therapist which your GP can refer you to, practicing relaxation techniques, perform specific exercises and/or using vaginal trainers.

I understand that pretty much all of the advice on how to deal with these side effects starts with “speak to your GP”. I understand that if you are at the point in your journey where these side effects may be impacting your life you may not want to get back on the carousel and call your GP to start the investigations all over again. I also understand the frustration of trying to get a medical professional to listen to you and refer efficiently to the correct department so you can get help. Trust me on that. However I want you to call them, be persistent and if you have to: call every day! Don’t be afraid to ask for second or third opinions from other doctors.

If you’re at a point where you feel you’re losing the fire in your belly to fight for yourself then take a strong chaperone, trusted family member/friend/partner. Someone who will help to support you and make sure that in a sea of 100s of other patients your 5 minute appointment stands out.

Some of these pain related symptoms may be eased by a good womens health osteopath or physiotherapist so search in your area and speak to them for more information on how much they can help and whether that type of treatment will suit you.

Womens-related healthcare has some major holes in it at the moment and there are those of us in the background who are trying to improve it, change it, raise awareness of it, one voice at a time. If you have read this far please share this post. Even if this doesn’t affect you, there may be someone you know who needs this information.

Photo by Verne Ho on Unsplash