Is it worth pursuing a diagnosis for endometriosis?

[Bookworm19]

Late last year, my GP suggested I might have endometriosis. It seems to fit the bill. I've been on the Pill since then which overall has helped my symptoms immeasurably. However, I recently messed up my tablets so all the symptoms have flared up again.

It's got me thinking if it's worth pursuing a referral for further testing. Even if it's not endometriosis, something is going on with my cycles. It's gotten consistently worse since my youngest was born (2 next month).

I have two children and don't want any more so fertility isn't a factor. I've had so much going on that I haven't had a chance to think about a proper diagnosis but I think I'm ready to start the process.

Do you think it would be worth it? If you've been diagnosed, how did you find it? Anything you can tell me would be great.

Please do follow up and try and get a diagnosis. If you know something isn't 'right' with your cycles then of course you should seek medical help.
Ask for a full blood count blood test and begin logging your cycles and symptoms, if you don't already.

You should pursue it and get a diagnosis but be aware that the only complete cure is a hysterectomy.

I would concur that this is worth pursuing. Some GPs are not up to speed at all when it comes to endometriosis so the fact your GP has mentioned this as a possible cause is a good thing. Do keep a daily pain and symptom diary if you do not already do this, this can give the gynae clues.

Its usually diagnosed through a keyhole surgery operation called a laparoscopy. Blood tests and internal ultrasound scans do not usually detect endometriosis if it is present.

www.endometriosis-uk.org/ is a good website

Some women have problems with endometriosis even post hysterectomy particularly if it is cited in other parts of the body like the intestines. Ovaries would need to be removed at the same time a hysterectomy is performed.

I would say it is worth it as endo is progressive disease. In my experience it got worse over two decades and ended up causing anatomical changes with my bowel adhered to my uterus, bowel and bladder severely affected plus very severe pain and fatigue. I had severe stage 4. However if I had fewer symptoms perhaps the thought of surgery etc would have put me off.

A hysterectomy won’t actually cure endometriosis. It will cause adenomyosis which is where you have endometriosis in the muscle of the uterus.Gold standard treatment for endometriosis is excision surgery (rather than ablation).

Endometriosis can only be diagnosed via laparoscopy where it can be treated at the same time (although some surgeons don’t always do this, I would look for one who is surgically competent enough to do that) but can also be seen if severe on an MRI, and adenomyosis can be seen on a US scan and MRI.

Good luck. I had two major surgeries and got rid of all endo, it can and does grow back though sadly.

Cure not cause*

I would say it was for me. I’ve always had painful periods. I’ve had 3 episodes of sudden onset abdo pain, admitted with suspected appendicitis. Scans showed nothing. My appendix is fine. I had all sorts of tests before I pushed for a gynae referral. I had a laparoscopy which confirmed Endo. They zapped it with heat and it settled down. If I get the abdo pain again, I’ll probably still be admitted (one of these times it could actually be my appendix) but at least if I don’t get worse (indicating my appendix) they’ll know it’s probably the Endo.

Just to say the only complete cure is a hysterectomy is untrue actually. It is the cure for Adenmyosis. However a hysterectomy doesn’t stop Endo from growing and causing problems elsewhere. I’ve actually heard a hysterectomy being described as a “barbaric” approach to Endo because it’s major surgery and doesn’t necessarily solve the problem.

Best treatment options are hormonal contraceptives, treatment such as diathermy surgically or inducing menopause. It’s been a few years since my lap and my period pains are getting worse again. I don’t get on with hormonal contraceptives (I was okay on Cerazette but when they made me switch to Cerelle it was awful) so I currently just painkiller up. I know there will come a point when I will need to ask for a gynae opinion, this time I will ask for an Endo specialist.

Yes, you do.
Moreover because you have had two children and presumably your periods have stopped for around two years and you still have pain. You truly want to have a severe endometriosis diagnosed.

@mdh2020

You should pursue it and get a diagnosis but be aware that the only complete cure is a hysterectomy.

mdh2020 this is wildly incorrect. A hysterectomy is not a cure. You can still have endo after. There is no cure for endometriosis.

OP I would definitely go for more testing just so you know what you're dealing with for definite. It could be other things too not just endo.

@mdh2020

You should pursue it and get a diagnosis but be aware that the only complete cure is a hysterectomy.

A hysterectomy is absolutely not a cure. It’s outside the uterus so removing it does nothing for endometriosis. If you keep your ovaries, endo will still grow. If your ovaries are removed and you take HRT, endo will still grow. If you don’t HRT it may stop growing but then you have the risks of early menopause.

There is no cure.

OP, the most effective treatment is excision surgery but it can still recur.

I was diagnosed at 22 and for many years thought I could just manage on the pill, but then I could no longer tolerate it. So then you’re a bit stuffed if you don’t already have a diagnosis.

Get referred to an endometriosis centre (not just the gynae department at your local hospital) for investigation and treatment. You can carry on with the pill if it works for you but at least if it stops working you’re not starting from scratch.

There is so much disinformation put there about Endo and treatment options OP, you need to do your own research and see a specialist. Don’t see a general gynae as quite frankly the chances are they won’t know the gold standard treatment for Endo (which is shocking but true) see an accredited bsge Endo specialist.
Hysterectomy is not a cure no, BUT, there is no ‘cure’ only treatment options and for some a hysterectomy carried put by an Endo specialist alonsgside excision surgery is the best option. Personally I am 2 years post op from a Radical hysterectomy which involves the ovaries being removed alongside the uterus and excision. I’ve been pain free with no symptoms and am on hrt. This was after previous radical excision where I had my entirely perineal wall excised and Endo removed from bowel and bladder. I had about 5 years pain free from that surgery so we’ll have to wait and see how long I get from the hysterectomy. It’s a progressive disease so earlier intervention will help long term.

Thank you everyone. I've started gathering info from here, old threads and the Endo website for everything I need to know to push for a referral. I'll speak to the GP who suggested it in the first place. She seems clued up on gynae stuff so hopefully it'll go smoothly, especially as she's the first GP to actually take my symptoms seriously. I've been racking my brain and lots of small things from years ago might actually be connected to now. Even if it's not Endo, something needs to be investigated because what I'm experiencing isn't normal.

Yes definitely worth pursuing with an endo specialist. I just had my fibroids removed but I suspected endo, which showed up in the ultrasound. When surgeon (endo specialist) operated, he found that my ovary was stuck to uterus wall, endo on ovary, and deep endo in bowel. He couldn’t treat the latter as he said it was too risky and would like a bowel surgeon involved. I had hideous pain passing wind or bowel movement during periods along with lower back ache, which makes sense now. I won’t be going back for further surgery unless my heavy bleeding has been resolved with the myomectomy surgery. Not all my endo showed up on my scans and so you won’t know the extent of it without further investigations.