Has anyones Endometriosis pain returned 5 months after treatment

[Kgleason88]

I had my second endo surgery back in September and already my pain/symptoms have returned. Has anyone else experienced this ?

[Coffina]

Hi , I am very sorry to hear you are again in pain with all the symptoms after 5 months.

No.... you are not imagining anything or exagerating your pain, I believe now that what you are going through is one of the reality of living with Endo!. It is quite "normal" among endo warriors to experience that.

I am also sorry to tell you that most women with Endo are angry/sad when they found out that surgery is not a lasting solution for it.

Most Doctors know this but I want to think they don't want us to feel hopeless, and they don't have anything else to offer apart from pain killers, and hormonal treatmenread but we have to try, right?

I was shocked to hear from other women before my laparoscopy that their pain was increased after the surgery and then, I read that laparoscopy as they do it here in UK and in most part of the world, is not even a reliable / suitable treatment at all.

Apparently it seems to relief some women temporarily , it can be a palliative treatment. UNFORTUNATELY that was NOT MY CASE .

For me it was only a way to be diagnosed and to remove polips that were causing me more pain because of the place they were located. I do believe surgery is necessary when you have these growths like polips and chocolate cysts as they can be quite dangerous, but in term of endo pain /symptoms, I don't think surgery is even a relief.

I dont know what you were told by your doctor, but I was particularly angry when I found out ( through my own research) total repetitive laparoscopies laser/ablation of endometriosis adherance can even make endometriosis pain worse.

Not even the removal of the uterus or ovaries ,

total/partial abdominal hysterectomy , may liberate us from the symptoms and pain, which I still found painfully true and utterly discouraging.

My understanding is that, this is the case because by the time we are diagnosed, this illness has advanced so much that there is not much to do about it.

Unfortunately, right now, there is not lasting relief from this health problem. However , I have heard/read ( never spoken to anybody) that some has been the exception of this "rule". So you should never give up.

I don't know how this can be of much help for you, but I found comfort in knowing the truth because it was important for me to know where I was standing. Although I won't lie, I did feel a bit hopeless at some point.

I grieved for a while and then I moved on. This has been a long process, I am still standing and enjoying my life as much as I can.

What has helped me to control the pain/symptoms?. A good consistent endo diet, supplements and tons of self care ( including mental health care).

I will recommend you a book " the Doctor will see you now recognising and treating endometriosis." Written by Tamer Seckin and especislist in endometriosis. It is a very moving informative book that presents medical facts.

Sorry, if I am not helping much with this long reply, I would like to tell you something that alleviate your suffering but we both know it is not that simple.

Whatever you do, please do not give up. You are stronger than this illness.

Take care

Big waves of courage and resilience

Your fellow endo warrior

Coffina.

[Coffina in reply to Coffina]

Sorry I meant may not liberate us *

[Kgleason88 in reply to Coffina]

Thank you so much for your reply. It’s so comforting to know I’m not the only one who feels this way. It’s dis-heartening to know that this pain has returned 😔I’m about to purchase that book now for sure.

Thank you again xx

[Seeking18 in reply to Kgleason88]

A book called Beating Endo is very good too. It is very helpful and guides you through what you need to go alongside surgery (excision surgery, NOT ablation as is so often given as it’s easier) to get rid of your endo pain. To summarise, your body does a whole tonne of things in reaction to the endo that actually causes you lots of pain and difficulties so you have to both have the excision and make all the lifestyle changes needed to make your body go back to normal.FYI the book recommended above and Beating Endo are available on Scribd and I think they do a free trial.

Good luck… I’m 2 weeks post excision surgery 1 of 2 🤞 really hoping that if I do all the right things I might be able to live a normal pain free life too

[AllthatGlitters]

Hi my pain came back 9 months after my first laparoscopy. It came back with a bang so to say and my life has been turned upside down because of it. I had 2 ablations which didn’t work, now on the list for a hysterectomy which will cure my adenomyosis but not endometriosis.

I don’t know what to suggest apart from see your doctor again, are you on medication to help?

These illnesses are awful and it’s terrible what it does physically and mentally x

[Avourneen]

I think this is really common but I also think it depends how good the surgeon is. I've had two ops one was ablation which shouldn't have been used and one was excision but not done well loads of endo was left. But I have spoken to women who had several ops and got nowhere but then went to different surgeons and had a complete cessation of symptoms.

I don't think there is a guarantee of anything 75 percent of women who have surgery need more surgery within 2 years but there definitely are some women who have ops and the surgerey works. I have spoken to quite a few on here, some who had 5 ops with one doctor and no improvement who just had one with different doctor and their pain stopped.

From the feedback I have had some of theAmerican doctors have much better success rates than here and women who have had robotic surgery seem to be getting better results. Different doctors use really different techniques and some appear to work better than others especially at reducing adhesions. From what I have heard here only 2 or 3 doctors seem to coming up with reliably good results. This is all anecdotal though I haven't seen any studies other than the one saying 75 percent need more surgery.

It depends also on what is wrong for example if endo is starting to narrow your bowel or strangle a kidney it would be essential. But there is evidence that having repeated surgery probably does make things worse.

I think it would make a huge difference if surgeons had to recoed their rates of reoccurance after surgery and if studies were done on how effective different surgical techniques were.But whenever I suggest this I'm shot down in flames and told "it's too difficult". However, if this kind of research is not done I can't see how best pratcice can be identified or how outcomes can be improved. We don't use it's too complicated as a cop out not to see what works best for other illnesses. We need much much more research and assessment into endo. The only think I can think of is writing to your MP if every woman with edno wrote to their MP and demanded more research then I think more would be done.