Guest post: Endometriosis: A Supporter’s Perspective by Lucjan
Living with Endometriosis
There is really nothing more miserable than seeing your loved one in pain day by day and knowing, you can do nothing about it!
Hi, I’m Lucjan B. and this is my story. A few words from a man who supports someone suffering from chronic illness.
I will never experience what my wife is going through, but I feel her pain every day, and I have seen her suffer anxiety over an unknown future and numerous disappointments that she has had to face over the last 4/5 years. Today we know that my wife suffers from one of the most common chronic illnesses that many people have never heard of – endometriosis.
There are lots of other medical conditions that affect mental health, especially if they are causing you to have a low quality of life, but in this post, I am focusing on one very close to my heart, as it has affected my wife. Also, because both myself and my wife are trying to bring awareness to people regarding endometriosis, as it is a very difficult disease to get diagnosed and there is currently no cure for it!
What is Endometriosis?
Endometriosis is a chronic and very painful illness that destroys the lives of many women. It is a condition where tissue similar to the lining of the womb that typically starts to grow outside the womb in other areas of the pelvis, sometimes infiltrating other organs in the pelvic area such as the bladder or the bowel. Rarely, it has also been found in other places in the body outside of the pelvic area.
The suffering is hard to deal with, the diagnosis takes 7 to 8 years in the UK and even longer in other countries. It affects 1 in 10 women. Yes, it’s really that common!
Its impact on a woman’s life is sometimes devastating and it has tried to invade our marriage, but we don’t let it beat us or ruin our lives. It could be impossibly hard for my wife if I wasn’t around to support her through the bad days.
It seems like I shouldn’t write about someone else’s illness, at the end of the day I haven’t gone through this excruciating condition. But the reason behind me writing it, is that it all had an impact on my own life as a husband and supporter.
Since this post is rather short I am going to underline the basics of what you need to know, to prepare you for what’s ahead in terms of treatment and managing your partner’s condition. Finally feeling like you’re not the only one supporting your loved one in silence.
It will allow you to understand the basics. If you would like to know more, my wife and I have written three detailed articles about the topic, consisting of 4000 to 10000 words.
Symptoms of Endometriosis
Women can start suffering from it as early as their teenage years. Catching it before its advanced stages is important, as not only does it cause years of pain and misery, but it can damage a women’s anatomy and may also render her infertile.
Symptoms of endometriosis are as follows, but they don’t all always happen together at the same time, until maybe in the later stages of the disease, this is why endometriosis is so hard to diagnose:
• Really long or extremely heavy periods
• Severe migraines
• Severe lower back, pelvic and sometimes leg pain during your period
• Painful bowel movements
• Allergies that get worse around your period
• Bleeding between periods
• Pain on intercourse
Normal menstrual cramps can usually be relieved with over-the-counter medication or home remedies such as a hot water-bottle, which helps to reduce the pain. But the cramps from endometriosis are sometimes called “killer cramps” because they can be so severe, they stop you in your tracks.
Endometriosis pain can feel so intense, it can affect your daily routine and it can even stop you from doing some of the things you love.
As a man, I always thought that periods were bloody and painful, but there is a very clear difference in what my wife suffers in relation to a normal period. She not only suffers symptoms when she is on her period but also at the time of ovulation and days before her period. It seems never-ending.
One of the symptoms she experienced before her recent surgery (which has improved things somewhat, at least for now) was a very bloated, heavy and painful belly. This occurred on and off at different times in her cycle, not just before a period.
This is referred to by endometriosis sufferers as “endo-belly” and I can tell you it looks extremely uncomfortable and painful.
She could look pregnant within a few hours and experience a lot of pain and discomfort and then the following day the swelling would just disappear, the symptoms would subside and she would have a flat tummy again.
Diagnosis of Endometriosis
Firstly, to diagnose endometriosis and other conditions that can cause pelvic pain your doctor will ask you to describe your symptoms. The problem is, that the vast majority of General Practitioners and General Gynaecologists don’t have enough knowledge about this chronic condition. This causes women the misery of waiting, frustrated and in pain, with no clear explanation for their symptoms.
This is where my presence was always handy. You see, doctors see a woman, who’s alone in a different light as opposed to her being with a partner. It seems like each time we visited a hospital or a clinic together, M was taken more seriously and things moved on quicker.
Each time a woman visits her doctor, they will immediately notice that she is in distress. The first thing they will say is something along the lines of “have you been anxious or stressed lately” or “how’s your life, is it stressful”?
These days almost every doctor sees anxiety and depression as an explanation for everything. They never ask themselves whether there might be a physical reason for your distress. They most often assume that the pain and symptoms must be due to stress and offer counseling and/or antidepressants.
They should think that there might be a possibility that your pain and symptoms are causing the stress in the first place!
Investigation and Surgical Treatment of Endometriosis
There are tests to check for physical clues of endometriosis, but only a specialist endometriosis surgeon who is BSGE accredited can diagnose it for sure via laparoscopy. BSGE stands for The British Society for Gynaecological Endoscopy.
General gynaecologists do not have enough experience in identifying or removing endometriotic lesions and they often miss endometriosis at laparoscopy, and if they do find it, they also fail to treat it correctly by using ablation techniques instead of excision.
Excision is the Gold Standard treatment for endometriosis as it removes the endometriosis lesions from the root and there is less chance of it returning, whereas ablation is like shaving the top of the lesions and leaving the roots.
The tests you may be offered before laparoscopy are as follows:
• Pelvic exam
But again, in order to diagnose endometriosis 100%, you need to be investigated via laparoscopy. This is where the help and support of your loved ones is vital.
My wife had all of these investigations, an ultrasound confirmed an endometrioma on her ovary, but it didn’t reveal the extent of the disease so a contrast MRI was performed and they saw nothing but the endometrioma.
However, when they looked inside she had extensive and deep infiltrating endometriosis in multiple places.
By conservative treatment, I mean treatment that doesn’t involve surgery. There are lots of different forms of treatment that may help with controlling pain for some women with endometriosis, and they are usually offered to women before they consider surgery or whilst they are awaiting surgery.
Unfortunately, they don’t help all women, and they certainly didn’t help my wife, but rather caused her more problems. Other treatment options are listed below:
• The combined oral contraceptive pill
• Progestogens, including the intrauterine system (IUS), the contraceptive injection, the implant and progestogen pills
• Gonadotrophin-releasing hormone (GnRH) to induce temporary menopause
The Effect of Endometriosis on Couples
Endometriosis can have a big impact on day-to-day life including work, parenting and simple tasks, even your social life. This may create an extra strain on couples and cause a lot of anxiety.
There may be an impact on the sufferer’s work causing a financial strain, as well as on your work because you might feel the need to take time off work to look after your partner, or take on more work more in order to keep up with the bills!
When it comes to social life, the feeling of being restricted can affect both partners and this causes a feeling of a sense of loss for both parties.
You may find that seeking the right treatment is an ongoing battle and that itself can cause frustration for both of you.
You might need to discuss if and how your partner would like you to help her make treatment decisions or not. You may also need to discuss what your role will be in consultations if you both attend.
That was the case for us – my wife asked me to attend with her for support and to help her remember all the questions we needed to ask. Sometimes it is difficult to remember everything you need to say in a consultation when you have limited time and are feeling very unwell.
Having your partner there to support you and prompt questions can be very helpful.
I wouldn’t be honest here without mentioning something that I found really difficult to deal with, and that was my Wife’s experience of pain with penetrative sex.
Sex plays a very important part of any couple’s relationship. Pain during or after sex is a common symptom of endometriosis, so if you as a woman experience it along with some of the other symptoms, go and check it with your doctor.
Don’t forget to mention to them that what you are experiencing are in fact symptoms of endometriosis and discuss with them the possibility of investigating your symptoms further.
Pain with sexual intercourse can be very distressing for couples and can result in a loss of intimacy.
You must remember however that sex is something that you can experience in many different forms. It is not always about penetration. Sex is about exploring what makes you both happy and you can give pleasure in many ways. If you love each other, you will find the way.
The amount of time it takes to get diagnosed will contribute to how you both feel. Once there is a diagnosis there is a feeling of relief, but also a feeling of wanting to take some control over the illness and your future.
Unfortunately, with endometriosis, there is only so much that can be done to stop it or at least slow down recurrence of the disease.
There is not even sufficient proof that taking hormones such as progesterone will stop or slow down recurrence, only help with symptoms in some cases. So after diagnosis and surgical treatment, you may feel relief, but at the same time, you may also feel that your everyday life has been changed and that you have moved into the unknown.
Women are advised to eat healthily, cut out certain foods, exercise and avoid stress to help with management of symptoms and recurrence of the disease, but again there is no proof that this actually works alone.
The truth is there is no cure for endometriosis, and after excision surgery, women are kind of put into remission, but not necessarily cured. The advice and treatment given after surgery really is all still based on theory, as there is currently not enough research bei⁸ng done into the condition!
But despite all the difficulties, endometriosis can make your relationships stronger, as you may need to communicate and work together to address the impact it can have.
These experiences can help you both to better understand one another, get closer. Providing care and support can help you appreciate one another more.
I hope you will find this article helpful and use the information provided to your advantage. Don’t doubt what she feels. Her body is trying to tell her how it feels. Tell your loved one to listen to her system and she won’t be disappointed.
I hope you enjoyed this article written from my point of view. I wish you all the very best in your battle with endometriosis or any chronic illness for that matter.
If you would like to know more about endometriosis, I’d like to invite you to visit our three posts on the subject:
You can also read Coralle’s story of what it’s like living with Endometriosis through this link.