Returning Endometriosis with a vengeance!

[AnissaEndo]

So approximately two years ago I had surgery for severe endometriosis. It didn’t particularly help with the pain as I also have adenomyosis, but I was just about managing. The NHS haven’t been very helpful as I have been waiting for nearly two years for the mirena coil. I took matters into my own hands and got the mirena privately fitted as I would do anything to not be in constant pain. After a few weeks with the coil I started to experience excruciating and paralysing pain on the left side of my pelvic. I thought the coil had become lodged somewhere as I couldn’t feel the strings hanging anymore. I went to a&e and had an internal scan. Turns out the coil is in place but my endometriosis has come back again in full force. The pain I am experiencing is because I have a hemorrhagic cyst on my left ovary as well as endo nodules all over my bowels and inner rectum. Of course the doctor has told me that if the cyst bursts I may be in more pain and only then should I come back to them and they ‘might’ operate to clear the fluid. Basically I’ve been told to ‘put a plaster on it’ and sent home packing on my merry way.

Anyways, the question I have is if anyone has had a similar experience of their endometriosis returning so soon after surgery and how have you been supported by your medical team through this?

[Purplestar86]

So sorry to hear you're suffering so much already AnissaEndo, its truly frustrating as we put all our hope on the surgery helping and giving us a lifeline.I haven't even had 2 years, my op was only last March and it has already returned and have 2 fairly large endometriomas again. I was gaslight into thinking it was 'muscular' back in November but I wasn't taking it for an answer and had an TV US in Jan which confirmed the return. I was told it shouldn't have been so quickly, but I have far from been supported by my medical team at the hospital but thankfully I have my GP on board, they have been fantastic.

The surgeon has placed me on medication with the view of further surgery but I don't see the point if it's going to return so quickly 🤷🏻‍♀️

[AnissaEndo in reply to Purplestar86]

Purplestar86

I feel truly sad to know that you have had your endo return so very quickly! 😞

I can sympathise with you not seeing the point of another surgery. It really feels like a never ending nightmare at times and like what even is the point of trying again.

I have never in my life been more gaslit then by the doctors into thinking that the endo hasn’t grown back. I don’t even have an appointment with the actual endo team as they’ve decided to just let gastro deal with me. It’s a feeling of being tossed away in the rubbish bin as if I’m a lost cause. Gastro doc really tried to tell me that the pain was most likely constipation or healing from the surgery - how wrong was he? Very! (Still no plan to give me a TV US from them. Good thing I followed my gut and went to a&e which proved its not all in my head (yet again)!

I hope you take into account the benefits of surgery but also way out the cons and do what is right for you and your body and it’s awesome you have a great GP! I think the hardest part is accepting this journey with our lifelong disease and just going with the flow especially when we’ve had all these future plans and goals for ourselves. Im trying to not beat myself up for the things I can not control. I just hope the government sort out the horrific state of the NHS and start taking women’s chronic health conditions seriously. I always say I know my body better than anyone and the last thing I would want is another surgery so why would it all be in my head? Why would I lie about pain that’s paralysing me?

I’m totally rambling. Let me know how it goes for you and if you feel better about proceeding with another surgery ♥️. At this point I’d do anything to just stop the pain.

[Kirsty360 in reply to AnissaEndo]

Wow, that's truly abhorrent that you have no specific team wanting to take responsibility for your follow up care. It hurts my heart how they cast us aside to crack on and deal with it, it isn't them suffering daily. As you say though it can only be a positive that women's health is taking more serious, sometimes you have to laugh at the audacious ideas they come up with to deny it's possibly endo (otherwise we would cry!) I am an amputee so that's why I was told it was muscular but when I questioned why it hurts as much on the opposite side, with a full limb, there was no reply!If they can say its anxiety and being overweight that's the only diagnosis they're happy to give, not the fact endo is the root cause of both those illness' it's a vicious cycle and you're right, we have lived in our bodies 100% of our life we should know what it feels like by now... Its not that I've ruled out another surgery per se, it was for my own sanity to know I wasn't making it up. I was asked by my team what I wanted to happen next and I replied that I didn't want to be gaslit and to be listened to, actually be heard and not cast aside.

For now I'm functioning fairly well and my symptoms are fairly controlled so Im in no hurry to push for further treatment options but I will certainly advocate loudly when the time comes.

Thank you for the supporting words, I just wish there was a way I could help with getting you to a point of such bad pain 🙏🏻✨

[NorthernFern in reply to Purplestar86]

Ugh this is awful, I am sorry. Did you have excision surgery or did they burn it away? I ask because I've just had a diagnosis and I'm torn about what to do. I've been told that if I don't have surgery the cysts will damage my ovaries, but they do have a habit of returning so I'm just not sure it's worth it. I went into the appointment to discuss the scan with the plan that if it was everywhere I'd have the surgery - it's infiltrating my uterus and part of my bowel, but it didn't sound bad enouhh for me to want to go through it all. I just feel lost and stuck. I've felt in a very lonely place since I found out.

[Purplestar86 in reply to NorthernFern]

You seem to be between a rock and a hard place with your condition. It's no wonder you're feeling lost. I understand when you say you're in a lonely place, sometimes it's not just the physical side that has an impact, mentally and emotionally is just as exhausting.Only you (and your team) can decide the best outcome with the pros and cons of each. There is no harm in doing plenty of your own research in the meantime to figure out what may suit best.

I had both, extensive excision and diathermy. It was kind of messy up in there! The surgeon has spoke of next options being a potential hysterectomy, again not always a guaranteed cure for such a major operation. But I'll cross that bridge when it comes to it.

Best of luck on your journey, hope it turns out for the best whichever you choose ✨️

[Swa_24]

Hi AnissaEndo , I've been in a similar boat as yours and have had my endo stage 4 + adenomyosis return within 2 years post surgery (2019) since then i've been on waiting list of NHS since 2022, they(NHS) say i have extensive endometriosis , they say they have marked my surgery as 'urgent' and still have no responses till today. The most funny part is they even pushed my primary 'urgent' appointment to discuss the MRI reports by like '10 months'. I mean who does that. I feel totally abandoned by the healthcare system - NHS.

I am on my 3rd course of zoladex which is ofc not so sweet as i've so many hormonal problems rising up but will anyone listen is i keep asking myself !!!

[Goldgirl]

I would recommend that you stop eating all animal products. Meat, fish, eggs, dairy etc

That should take care of most of the pain

It’s natural, non-invasive and safe

Some people swear by the carnivore diet

For me, vegan diet helped remove almost all pain and bloating. plus I even got pregnant for the first time in years after several failed IVF cycles

Try both vegan and carnivore and see which one helps

[Goldgirl in reply to Goldgirl]

I avoided soy also

[Clare_Devon]

HiyaI had surgery in November 2023 to remove a 6cm lesion that had adhered my uterus to my abdominal wall. That was an open, excision surgery. That seemed to help that immediate issue but unfortunately, I am now waiting to have a laparoscopic excision on the same side in the next few months, due to continued discomfort and endo related issues. The laparoscopy is also to identify if I have Adenomyosis. If this is the case, I will require a hysterectomy.

The issue with any type of endo surgery, is that it can come back. I have heard time and again that excision surgery is 'gold standard' and that ablation is not permanent but I had excision surgery and it's still returned.

It really sounds like that cyst needs to come out. I'm not a medical professional at all though. Cysts often just fill back up again over time.

Could your GP not refer you to a different hospital in your area? You could enquire about waiting times and compare before you make this decision.

I was waiting over a year to see my first Gynecological specialist and in the end, I called the the hospital direct and booked the next available appointment myself. The situation is so ridiculous at the moment.

For me, the mirena coil made my pain worse and really affected my mental health, but that is only my experience.

In the end I had it taken out and managed my pain with medication from the GP.

Hope you get to see a Dr soon and get the relief you need. Try calling outpatients yourself, rather than waiting for them to contact you x