Endometriosis surgery. M’s perspective…
Christmas 2019 – my 1st endometriosis surgery…
Well, I am now just over 4 months post excision laparoscopic surgery for stage 3/4 deep infiltrating endometriosis and it is almost Christmas! Time goes so fast!
While I write this I am currently about to have my 6th period in 4 months and I have been suffering acid reflux, gas, and period cramps for a week already. This morning I feel nauseous, just want my period to come to release the pressure and get it over with!
I had a few tears last night as I was feeling similar to what I did pre-surgery, my whole abdomen felt in contraction and it was making me feel sick.
I have been suffering from constant reflux and a bubbling sensation in my gastrointestinal tract for 7 days now! It almost feels like I have a constant fizzing sensation and gas on my tongue and my tummy feels irritated.
It scares me that the endo is coming back already or maybe it’s just IBS, or something more sinister??
I know I will feel too ill to go to the Christmas Dance Ball tomorrow night and again I am scared to arrange anything over Christmas, as I know I am about to bleed and it could be a really bad one!
I feel like I have no control over things no matter what I try and do to keep well.
My darkest thought is that this thing is really gonna take my life away from me and leave me racked with pain till I die!
I know it all sounds a bit dramatic, but those are the thoughts that go through my head, and I have to challenge them every time I feel ill. For those of you that don’t know about endometriosis, let me tell you it is very rare for the disease not to come back after surgery at some point, just not usually that soon.
The truth is that in a lot of cases it does come back at some point in the future even after excision surgery because it is a chronic disease and there is only so much the medical profession can offer to endo sufferers.
Sure they can offer hormones or the pill that can mask the symptoms of the disease, but not necessarily slow down its growth, and they can often cause worse side effects.
They can offer drugs that put you into temporary menopause, which causes worse side effects. They can offer you painkillers and other drugs for digestive issues, and then there is endometriosis surgery.
It is very difficult for women to feel positive when they have exhausted all the options available and still feel some kind of chronic pain and basically crap most days.
You can’t eat anything you like, you can’t do the things you love because you’re either in pain or exhausted, and you can’t plan anything important too far in advance because the symptoms of this thing can be mild one day and come at you like a ton of bricks the next!
I myself have not exhausted all the treatment options available yet. I have not tried the Mirena coil, but progesterone doesn’t agree with me in terms of mood.
I also had an IUD before and caused me more pain, so I am skeptical about that side of things too.
I have not been offered injections to put me into temporary menopause, but I have to say that after hearing about what happens to other women on these injections in terms of menopausal side effects, I would prefer the pain at the moment!
In the past, even when I was at my worst, I tried my best not to let the symptoms get in the way of my life. I pushed myself to the limit, sometimes trying to enjoy myself when in fact I was suffering and in pain.
Then I would just feel tearful and exhausted for days afterward, and it was a vicious cycle of pain and fighting, putting on a brave face and then misery and exhaustion when I had nothing left in me to give.
However, the way I looked at it was that at least I had the strength and motivation to carry on through the pain without the hormones (progesterone-only pill). When I was on the pill I had no energy or motivation to care because my mood was so low!
I am not against taking hormones in any way, they work for some women, just not for me!
Admittedly up until last week I thought my symptoms had somewhat improved since endometriosis surgery.
My first period after surgery was very painful and slightly heavy, but the rest have been painful, but only for 2 days and normal in-flow, which is a big improvement compared to before.
I always suffer from reflux, gas, and bloating at ovulation and before my period and had only suffered from this for a day or two during my cycle, although my cycles have gotten even shorter.
I also had a flare of really bad lower back and pelvic pain after my last period which lasted a week, but I thought I may have overdone the dancing in the days preceding.
I thought well if it’s going to be like this, it’s not too bad I can live with it! I can’t take the combined pill because of migraines and the progesterone-only pill (Cerazette) put me into a pit of depression when I last tried it, and I had such bad brain fog I couldn’t focus on anything.
My limbs felt like lead and I was having palpitations and pressure feeling in my head every day.
It still didn’t stop me from bleeding either, which was the main reason I was taking it. I decided to stop taking it.
I would rather cope with the pain. I wasn’t in pain every day and had some good days, and at least without the pill, I could focus and had some energy and motivation to fight through.
I concluded that my only option was the following:
- to carry on eating a healthy and nutritious diet
- reduce sugar intake to the minimum
- avoiding eating certain foods to minimize acid reflux and IBS symptoms
- reduce or eliminate oestrogen containing foods such as dairy, red meat, and wheat.
- aim to exercise as much as I can (in my case Latin and Ballroom Dance and Pilates)
- try and reduce my stress levels in any way possible
- consult a pelvic physio for the tight pelvic pain and tight pelvic floor muscles
However, this morning I am not so sure that any of this is going to work, especially if I am having symptoms again only 4 months post-surgery! I’m praying it’s just a one-off bad cycle this month!
Don’t get me wrong the symptoms are no way near as severe as before the endometriosis surgery, I was in so much pain then I was rolling around on the floor at home and had to be taken to hospital on numerous occasions for stronger pain relief.
After endometriosis surgery…
I don’t like taking painkillers because they cause me more digestive problems, so I really just survived on Paracetamol until I was in excruciating pain and was offered Diclofenac suppositories or Morphine. I chose the suppositories.
Then there was the heavy bleeding that made me anemic and I collapsed quite a few times and was taken to hospital. The bleeding now is definitely nothing like before.
I recently had a follow-up appointment with my consultant and I admitted that things were not anywhere as severe as before, but that I still had pelvic/back pain on and off and gastrointestinal problems.
He basically said that at 6 months post-op women usually feel the full benefit and then that’s “as good as it gets” at least for the extent of endo I had. So I guess I still have a couple more months to see if things improve!
Something else I found out at the consultation was that I actually had stage 3/4 endo rather than stage 3 because I had recto-vaginal endometriosis, and endometriosis on my bladder and uterosacral ligaments.
This is actually one of the worse types of endo and it’s called Deep Infiltrating Endo because it infiltrates structures and sometimes other organs in the pelvis.
I was just lucky it hadn’t infiltrated my colon or I would have needed another surgery with a colorectal surgeon.
They shaved a big section of my rectovaginal area, and normally they do this because excision is quite risky there.
The rest was excised, except for an endometriotic lesion (not an endometrioma, which is a cyst) that was attached to my ovary, which was ablated… I guess to avoid damage to the ovary.
When I asked about the possibility of the endo returning the consultant said that “6 in 7 women don’t have a recurrence within 2 years and 1 in 7 do??” I really do hope I’m not the 1 in 7!
When I said I still had reflux and digestive issues and pain at ovulation and before my period, he suggested that it was possible that I might have microscopic adenomyosis that might still be causing me pain, and that the Mirena coil would be best for that.
It’s because of my experience with progesterone affecting my mood, I should weigh up the pros and cons and I said I would discuss it with the hormone clinic at my appointment in February.
They had previously mentioned me having the coil with an oestrogen patch to help with my mood, but that was before I was diagnosed with endo. Now they are not so keen on giving me oestrogen patches because endometriosis is an oestrogen driven disease!
My consultant said “the only option if you have adenomyosis is the coil or hysterectomy”, but they could leave the ovaries in so I would still produce my own oestrogen rather than having to have HRT. I said no thank you very much!
Adenomyosis is basically like endometriosis inside the muscle wall of the womb. If it is bad it can be picked up on ultrasound or MRI, but nothing showed up on mine and I had a hysteroscopy to investigate my womb at the same time as my laparoscopy and it all looked normal.
The consultant asked how my bowels and bladder were working and I said they work, but sometimes I feel that I don’t void urine and feces properly because everything feels so tight in there, just as it was before endometriosis surgery, although it’s not painful anymore.
By this I meant I wee and stop the flow a lot and sometimes have to wee again half an hour later. The same goes for pooing….sorry about all this nasty information, but it needs to be said.
He didn’t make a comment like it was to be expected as long as I didn’t have pain??
He also asked me was “how sexual intercourse was” and I said I hadn’t tried, because I was still having cramps and pain in that area and felt quite scared about it.
He said “well, you won’t know unless you try”, which I guess is true, but because of the tightness I still feel in the area I feel like it will set off a pain flare-up so have been avoiding it.
Luckily I have been referred to see a pelvic physio to see if they can help me with my tight pelvic floor muscles and check whether the scarring from the endo and surgery might have had an effect on their function as well.
Yes, unfortunately, penetrative sex is another pleasure I have had taken away from me at least for the last 3 years as it just got too painful, and of course, at first, I never mentioned it to my husband for fear of upsetting him, I just avoided it by doing other things or nothing at all.
Obviously, you don’t have to have penetrative sex to have pleasure with your partner, but I still feel that it takes away the intimacy and I still feel quite guilty about it.
In fact, I feel guilty about all of this, about being sick all the time and not being the strong, invincible woman I once was!
Of course, I have never been someone to give up, I’m a fighter and I still aim to fight through the illness and pain in order to do the things that I enjoy, number one being dancing!
It’s just that sometimes I want to curl up in a ball and give up because I know that I will never be the same, and I will be fighting this illness even if others won’t see it possible for the rest of my life, or at least until after menopause when my oestrogen levels will be at their all-time low and hopefully the disease won’t progress.
Although the menopause without hormones is another thing I am not looking forward to. You can, of course, take HRT, but the oestrogen can drive the disease to progress again, so that’s something to worry about!
Well I am 44 and my mother went through menopause at around 57 years of age, so it looks like I have a lot more years to fight through before then.
But I am praying that for all of us endo sufferers there will be an alternative treatment without all the awful side effects or God willing a cure for this terrible disease before then.
We need to spread awareness about this disease!
Because it is difficult to diagnose and there is a lack of knowledge about the symptoms and treatments for it (even among the medical professionals) I can’t imagine how many women are suffering in silence out there and don’t even know they have it.
I was fobbed off by my GP for 4.5 years before I got a referral to a specialist BSGE surgeon, so I know how other women feel when they go to their GP or even general gynaecologist time and time again and come away with nothing.
They start to feel like it’s all in their head and they feel guilty for wasting the doctor’s time, so they just go away and take the painkillers, antidepressants, or hormonal treatment they are prescribed, and continue to suffer in silence because the drugs are no longer working either.
They hide it and carry on with what is left of their life until things get so bad that they end up in the hospital, either with severe pain or bleeding, or because they have tried to commit suicide or self-harm.
In the last 2 years running up to my diagnosis, I was admitted to the hospital for all three of these reasons.
The worse thing is not knowing what is wrong with you. I seriously thought I had cancer somewhere in my body. I had lost so much weight, become anaemic, and was in pain and having digestive problems almost constantly.
The bottom line is that the more awareness we spread, the more women like us will push for a diagnosis with endometriosis surgery, and the more women that are found to suffer from the disease, the more likely the government will put more money into research to find alternative treatments or a cure.
Of course, there are also charitable organizations that can help raise money for this, but there aren’t that many for endometriosis.
In fact, there is only one endometriosis charity that I know of in the UK and that is Endometriosis UK, where I have gotten nearly all of my knowledge about the subject from, and I regularly attend their support meetings in the London area.
If it wasn’t for them I honestly don’t know where I would be!
But if you don’t have access to nearby support groups I would really recommend two books that helped me understand this whole process…
The books that helped me!
This book has really changed my wife’s life! She struggled with her diagnosis and had nowhere to turn to for knowledge and advice. This book has everything you need to know to prepare you for what’s ahead in terms of symptoms, treatment, and managing your endometriosis. We truly cannot recommend it enough! This book is definitely worth every single penny!
I listed this book because M also suffered from anxiety at that time, it helped her mindset and depression. An obsessing, ruminating, and dwelling on things may or may not happen, but this book makes it simple to understand, how to manage your fear. Your brain is a very powerful tool, and the more you work to change your mindset, the better you’re going to feel.
Out of the 100 million American women, roughly 60 percent take it for non-contraceptive reasons like painful periods, endometriosis, PCOS, and acne. While the birth control pill is widely prescribed as a quick-fix solution to a variety of women’s health conditions, taking it can also result in other more serious and dangerous health consequences.
I’m M, Lucjan’s wife! At the age of 44, I found out that I suffer from endometriosis, which has taken years to diagnose. The following year, I was also diagnosed with fibromyalgia disorder…