Another endometriosis thread

[damageinprogress]

Looking for other people's experiences with endo diagnosis/treatment. I won't go into the 15 years of fucking about I've been through to even get to this stage but currently I am awaiting an appointment with an endo specialist unit, which at the moment is due to be in May (telephone app) but it has already been cancelled and rescheduled twice so who knows. I've had many ultrasounds, blood tests, cystoscopy, hip X-rays, all have been clear, and have decided to bite the bullet and pay privately for an MRI which is next week so that at least once I am actually in the system in the Endo clinic it might move things along.

Currently have the coil but my symptoms are still getting progressively worse. I don't want to take the pill alongside the coil and I don't want zoladex etc because I don't really want to just swap current symptoms for a host of side effects and pill hasn't helped me in the past.

What are my options? Should I be pushing for laparoscopy? Am I just doomed to have shit quality of life for 75% of the month every month? Can my ovaries in fact gnaw their way clean out of my body as they feel like they are currently trying to do?

Bump x

Laparoscopy 💯 and you want the consultant to do excision rather than ablation of any endo they find. If you've got means to go private I would see a gynaecologist privately.

Endo is utter garbage ❤️ check out Nancy's Nook / endo UK

Don't let them minimise your symptoms or gas light you ❤️

It took 8+ years for me to get a diagnosis / treatment and I ended up going private (thank goodness for DH private medical through work). They found a stage 4 endo car crash in my pelvis and it has infiltrated my bowel as well so more surgery for me in the not too distant future

I had years of hell. Went private, laparoscopy showed stage 4 endo. Had partial hysterectomy with endo lesions exised, no problems since, it’s been 12 years. Menopause is another matter!!

Thank you for your reply, and I'm glad you finally got the surgery but sorry it's all such a shit show. I have the means to go private for a certain amount but not really for the surgery, and to be honest I've seen so many different people and read up so much that I don't feel a private gynae will be able to tell me any more/do more for me than I already know, other than refer me for the lap, but then id be back to square one because the NHS waitlists are so long. I'm really hoping that once I am in the system with the Endo Clinic they will take me seriously. I feel like I am well armed now with enough information and rage that I am not going to let them fob me off any more, I just need to get in the door... the whole thing is just so bloody exhausting and demoralising :(

What age are you and are you done having children? I ask because I had an endometrial ablation and it has been life changing. I haven't had a period since and almost zero pain, like sometimes a niggle but both like before. It's not suitable if you want to have children though.

@Littlemissprosecco that's great that your surgery was successful, I've heard so many negative stories. My issue is I'm still at a stage where I think I would like another baby, but I can't make that decision yet because until I know that someone is actually going to do something to help me feel better, im just not in a position to cope with a toddler and a baby. Frustratingly, docs keep telling me I "shouldn't wait" as if I don't have weeks of fatigue and pain and ill health each month. It's just too much of a gamble!

@Invisimamma I'm 35 and have one child but not sure I'm done yet, and I know that preserving fertility adds an extra layer of complication.

@Invisimamma I also don't have heavy periods, if anything my periods have always been incredibly short and very very light- I think this is one of the main reasons I wasn't taken seriously for so many years

They won't do an ablation if you're not done with kids, I was 29 mine I had mine which is unusually young but I have two children and dp had the snip at the same time so I think they were convinced enough we were done.
I did have very heavy bleeding and flooding and a lot of pain..I don't think it'd be best course of action for you without heavy periods, sorry. I hope you find answers.

Thanks for the info @Invisimamma , really useful to know. I've always found it amazing the extreme amount of pain that I get for such light periods, it makes zero sense to me!

ok, slightly different circumstances. I was 37 and had had three children. The NHS did an ablation, and put me into chemical menopause ( whilst I had three under 7! ) , it was an unmanageable situation for me. Private surgery was my only option.

@Littlemissprosecco I think this is my worry, that they will try and tell me that lap is absolute last resort and they will want to try more medical stuff first and in my experience all it does is swap one set of symptoms for another- I have a busy full time job and a toddler and I just want to not be clawing my way through the days anymore. So glad you were able to get solutions.

If you have the means to go private then I would, even for some initial tests. I know a laparoscopy is meant to be the definitive tool for diagnosis, but I paid to see a fabulous consultant who diagnosed me by doing a transvaginal ultrasound. I had stage 4 Endo and ended up having a full hysterectomy.
I have every sympathy for you, it’s so miserable and debilitating I hope you get some treatment soon.

I was recently diagnosed with adenomyosis so literally feel your pain.
Started pleading for help aged 14 but wasn't taken seriously until i was 46 when i was advised to lie to the sexual health clinic and ask for mirena coil for contraception. 32 years of which at least 8 years of my life were spent in horrendous pain. Massive effect on quality of life etc.

Men wouldn't have to put up with this shit.

I’m not sure about the MRI, it was never offered to me. My ultrasound scans never showed anything but the lap showed deep endo.

Some was treated but it was too much for day surgery. No pain reduction from that.

The second surgery was inpatient and removed endo and parts of body was attached to. Took several months for the pain to start being improved.

Pain came back worse than ever TTC as no pill.

Biggest overall reduction to daily pain has been no wheat. Some studies about that. I also do extremely limited dairy and sugar. Have much worse pain if I indulge at Xmas etc

Diet stops pain from spreading across the month. Lower carb helps reduce ovary pain and cysts greatly for me and gives as regular cycle.

Swapping running for low impact helped a great deal for me. Women’s health physio.

Acupuncture helps me.

Pill helps me.

Ablation has been amazing for my ridiculous bleeding but hasn’t reduced my period pain at all. My sister reports the same.

Definitely need to keep pushing for proper diagnosis ie lap. But for me the surgeries alone weren’t the pain relief solution.

@Pegsmum do you mind me asking if you had had any transvaginal ultrasounds before then that showed nothing? I've had 3 so far.. every couple of years they say "we can try an ultrasound" and off I toddle again to get one that comes back with "no further action needed"

@ReverseFerret sorry you had to go through all that.
@mamaison diet is defo something I could address, I go through phases but find it really hard to stick to a restrictive diet when I am exhausted and in pain, which I am aware is stupid because it's a vicious cycle!!

My private ultrasound picked up adeno which the nhs missed!!
which was why the ablation caused more problems.
You really do need to be sure of your diagnosis before you agree to any treatment. Private tests should be more detailed, ask, then ask again.

I am having a laparoscopy as part of fine stage fertility investigations (IVF hasn't worked so far). My understanding is that endo doesn't show on any ultrasounds or scans; a lap is the only way to find it.

I keep hearing that excision is better than ablation but I'm not sure how it works if you don't want your ovaries etc damaged. I need to read up on it and see which one I need to push for.

I first reported symptoms of this about 14 years ago. It has taken me, and only me, to finally put the jigsaw pieces together and push to ask for a lap. I think they are going to find it all over my bowel.

After what must be a total of 30 scans through infertility investigations and IVF rounds, I only found out I had adeno when one of the consultants mentioned I had it when I told him that I was going to have a lap for suspected endo. No one had even thought of mentioning it to me before!!

@Invisimamma that's interesting as I found out after my private excision surgery that our NHS trust only offered ablation regardless of whether or not you had or wanted children 🤦‍♀️ but then again none of the gynae consultants were educated in endo, a whole other story for another day and don't want to derail the OP original thread.

@ReverseFerret absolutely the misogyny within healthcare especially the NHS is astounding! If men suffered from endo there would've been plenty of solutions on the floor! Interestingly though my private gynae is male and endo cure / management is one of his passions. I feel very lucky to have found him ❤️ on the flip side the NHS female gynae I had the displeasure to deal with was an absolute witch 🧙‍♀️

Yes, I’d had one transvaginal scan on the NHS and a few ultrasounds of my bladder. Never had a MRI and it was never suggested.
After I was diagnosed the consultant told me not to pay anymore privately and he would see me on the NHS, I was very fortunate. My CA125 levels were high so I had a hysterectomy.
I lived on a concoction of painkillers for years but I wonder have you ever tried Serrapeptase?

@Decaffe I had excision for my endo prior to our IVF journey which has resulted in a sticky 🫘 🤞🏻l lost a Fallopian tube due to hydosphinx, and 2/3 of my left ovary which turned out to be my most receptive ovary to the IVF stims 💖 forever grateful to my gynae consultant for leaving that 1/3 behind

I don't suffer anymore as I'm post menopause... however, any younger women reading this... please, please, please don't let GPS fob you off, keep pushing for a solution that works for you!

I was diagnosed over 20 years ago, I was ‘lucky’ as I needed emergency surgery after cyst rupture and then got the diagnosis not waiting the usual 7+ years. (I’m not in uk but same story for Endo women where I am)

They then gave me the coil to see if that could help prevent cyst formation. It didn’t at all, quite the contrary, which studies have shown since. So I’m a little confused as to why they have given you the coil as I thought it was contraindicated..
Make sure it doesn’t make your situation worse and stay on top of scans to keep an eye on any cysts.

Best of luck, it is awful❤️