Endometriosis, migraines and IBS: A daily ordeal!

Hello Morgane888, thank you for accepting to share your story with us on Carenity. 

First of all, could you tell us a little bit about yourself? 

Hello everyone, I'm Morgane, a young woman of 27 years old, in a long-term relationship without children. I am currently undergoing, since May 2021, a professional transition to become a self-employed bookseller. I am a medical laboratory technician.

I am a book lover and am passionate about writing, especially the fantasy genre. I also love, since I was very young, everything related to esotericism and personal development.

In the last year, I've felt a need to get involved with medical advancement both for myself and for others, because I would have liked to have had support from other patients from the beginning of my health journey.

This is why, since March 2021, I've become an actor of change by becoming a volunteer with the only French association dedicated to the fight against irritable bowel syndrome and the main moderator of the association's Facebook page. I really enjoy the contact with patients, it is a real mutual exchange between to find out how to better manage our daily lives. 

You have endometriosis, chronic migraines, and irritable bowel syndrome. Could you tell us which is the most difficult to manage in the day-to-day? What symptoms do you experience? What treatments have you tried? 

The truth is that it depends a little bit on the moment, because when I am in a flare-up, the pain triggers even more pain, which causes the other conditions to flare. Currently, what's the hardest for me to manage on a daily basis are my chronic migraines with auras that are resistant to current treatments.

I am on my tenth course of treatment and many more treatments for flare-ups. As a result, I now "manage" with NSAIDs (non-steroidal anti-inflammatory drugs) as crisis treatment, which is obviously not good for my health in general.

And in parallel, I have built up my 'toolbox', as I call it, with non-drug methods of relief. This includes aromatherapy (essential oils and herbal supplements), osteopathy, relaxation therapy, meditation, stretching, cold compresses, sleep management, etc.

The migraines came on gradually: from a few hours to a week, or 7 days in a row. They affect my vision in the form of flashes or flickers, sometimes even dizziness, a feeling of loss of balance, often at these times I am also nauseous or even vomit.

When I am at this stage, I have to lie down in the dark, take an NSAID (aspirin or ibuprofen in my case), with an ice pack on my head. Often the pain starts on one side of my head, but if I don't manage to treat it within half an hour, it will spread to the rest of head and down into my neck.

I started a new drug in mid-September, so we'll see how it goes. But I'm keeping my fingers crossed because it's very tiring and people often think I'm just dealing with simple headaches. There's really not much understanding about migraines, it's really frustrating.

It can take quite a long time to be diagnosed with endometriosis. How long did it take in your case? Were you given all the information you needed to understand the condition?

For me, it took 14 years to get a diagnosis, which led to many years of frustration, confusion, sadness, loneliness, shame, anger....

Even today, getting recognition of my endometriosis from the medical community after diagnosis is complicated, contrary to what I've heard or read. My endometriosis was categorised as "superficial" because the lesions it caused were not, or were only slightly, visible on medical imaging (via MRI or ultrasound).

I will always remember the day I was diagnosed by a "specialised" gynaecologist in an endometriosis centre: "You only have superficial endometriosis; you mustn't suffer that much compared to women who have to have surgery".

It's so shameful to say that to a patient who has been suffering since she was 14 years old when we know that the pain is not representative of the lesions!

I can't say that I was properly informed and understood what endometriosis is and what it entails. Far from it! I did, in fact, do my own research. First, I looked in books on endometriosis, then I went to discussion groups on social networks including Carenity, and finally, I also went to endometriosis charities and organisations. 

Could you tell us about the pain and symptoms you experience with endometriosis?

To begin with, I have digestive pain: abdominal pain, digestive problems (alternating constipation/diarrhoea), bloating, gas, nausea and sometimes vomiting.

I have pelvic and urinary pain: cramping or stabbing pain in the lower abdomen or in the ovarian region, mainly on the left side. 

I also have problems with urination, cystitis, and fungal infections on a regular basis... I have a really weak flow which forces me to go to the toilet frequently during the day.

There's also period pains (dysmenorrhoea), the infamous PMS (premenstrual syndrome), and heavy and irregular periods, especially before I found the right contraceptive method. Today I take a continuous pill, so I have no more periods.

My general health is also affected: weight fluctuations (gain or loss), repetitive attacks of faintness due to pain, chronic fatigue syndrome, and deficiencies at times.

Also, I experience neuropathic pain located in the pudendal nerve that innervates the perineum (between the clitoris and the anus) and is triggered during urination or bowel movement.

And finally, dyspareunia (pain during sexual intercourse), I had to wait until I was 26 years old to have "normal" sex because penetration would trigger burning sensations and chapping in the vulva.

What care or treatment are you receiving?

After having taken multiple painkillers such as codeine, opiates, NSAIDs, antidepressants, anxiolytics... I preferred to reduce the medication because I no longer felt like myself.  

I now treat myself with more natural methods. I take plant-based treatments in the form of aromatherapy (essential oils, herbal teas, Bach flowers, etc.). At the pain centre, I am currently testing transcutaneous electrical nerve stimulation (TENS). This treatment is quite recent, I had to really insist. 

And how have you experienced irritable bowel syndrome? Have you had to change your eating habits to limit its symptoms?

My symptoms are mainly digestive issues (like those mentioned above) because unfortunately I still have a lot of trouble determining which are caused by endometriosis and which are caused by IBS. So, I have digestive problems, bloating, gas, and vomiting. I also have gastroesophageal reflux disease (GERD). When I have an episode of constipation, it causes me haemorrhoids and anal pain.

I also have abdominal pain, especially in the epigastric area and in the descending colon (the left side). 

I have had to adapt my diet: I have tried the FODMAP diet, without any notable success. But when I'm really unwell and in a flare-up, I restart the diet to ease my gut and stomach.

I had two periods where I had to take high-protein supplements to make up for the deficiencies caused by my IBS.

Today, I eat quite normally, avoiding, of course, what makes me sick: intolerance to rice, beans, alliums (leeks, onions, shallots), and I have also reduced lactose. And instead of three main meals during the day, I have five or six. I have also removed most preprepared foods. If I have a flare-up, I also reduce gluten, sugar and fat. I adapt every day according to how I feel!

What impact have these three conditions had on your personal and professional life?

In reality, I have only one word: an ORDEAL!

In the professional world, I was off on sick leave for over a year and a half. I had to consider a change of profession to get out of it because I couldn't take on my job with its too random hours and sometimes have to work alone. Because of my repeated spells of faintness, I was made to understand that I couldn't continue.

In my personal life, my conditions trigger a lot of frustration and anger towards the medical community. I had to rebuild my whole life at the age of 26, that is to say, I had to change all aspects of my life all alone, because you can't rely on doctors to help or advise you.

Even though I had to come to terms with the fact that I had to accept these conditions, it is still very difficult for me to live with them, between the lack of compassion, the lack of listening, the lack of recognition, and having to combine my professional life, my personal life, and my conditions.

Are you able to talk openly about your conditions with your friends and family? Do they understand what you're going through? Do you feel supported?

For me, yes, it is easy to talk about it because it's also a first step towards acceptance. And as long as you don't accept that you are "sick", you can't move forward. It's not easy to find people who are aware and understanding. But I say to myself that the more we talk about it, the more we express what we feel, what we experience on a daily basis, to our families, our friends, our entourage, our colleagues, health professionals, etc., the more we will move towards recognition and listening from the general public, but also to the medical community.

Crohn's disease patients, whose illness is more visible, are more recognised than IBS patients. Nevertheless, we have the same issues, the same dietary concerns, but we have no recognition by the medical community!

We are then taken for fools, sensitive people, sissies, in short, in any case not for "sick" people!

For my mum, it's very complicated because she's held onto a lot of anger and frustration about my health since I was a teen, but also about my future as a young woman, as a mother-to-be? But mainly, what is complicated is the way she sees that I am treated by the medical community.

But my close friends (although I don't have many because it's difficult to have a social life when you have multiple illnesses, even when you're young) and my partner support me as best they can, but they too end up getting tired and don't know how to help me anymore.

Do you think there is a link between your three conditions?

For me, yes, there is a link because one triggers the other, and everything is centralised in the same place. After all, I'm not a doctor, but I must admit that this is not the first time that a patient has presented with several chronic illnesses. When we know that one person in three has a chronic illness today, I wonder why we don't pay more attention to it? Maybe it's time to advance research in this area?

What do you think of patient exchange platforms like Carenity? Have you found the advice and support you were looking for? 

I think that these different platforms are indispensable today, they allow us to find support, tips for relief, information to understand what is going on. We feel listened to and understood. Personally, I log on quite frequently. I don't necessarily comment, but I get a lot of information, and I also read the articles and comments of other users.

What advice would you give to other Carenity members living with one or more of your three conditions?

That they should not hesitate to talk about it! Because communication is essential in our daily lives as human beings, but even more so as chronically ill patients. If relatives, colleagues, etc. don't seem to be understanding or compassionate, or if they don't have time, you should explore these patient support platforms or discussion groups. Today, there are many of them and on all sorts of subjects. I have met some friends through this network.

I also think that, as a patient, we have certain "rights and obligations". Of course, we have to make ourselves heard, but not by imposing ourselves or our opinions, because that never works. On the other hand, we have a duty not to let ourselves go to the wayside. We have to take charge of our health. Too many patients no longer feel "capable" and rightly so, but when our mood and abilities are impacted by our illness, it is all the more difficult to return to a "free" life not controlled by illness; we really must not lose sight of this freedom which is so important for us!

Any final words?

I would really like to be able, in my own small way, to advance things little by little. I need to feel useful, to be active despite my health concerns.

And of course, I am always available to discuss with the Carenity community if anyone would like more information, has questions, or wants clarifications on my testimonial.

I would like to thank the entire Carenity team for giving us the space to listen, exchange and share amongst patients.

 Many thanks to Morgane888 for sharing her story with us on Carenity! 

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