Endometriosis

[Pawprints2017]

Really just looking for other people's opinions. I'm really sorry if this is long.
I've always had horrendous periods and pain so suspected endo. Advised always to use various contraceptives. Eventually told I had to have a coil or they wouldn't see me anymore. Contracted PID which they said they had treated but hadn't so went private and got treated but ended up with endometritis as a result. Even when things were fixed I was left with constant bleeding, uterine pain and the worst is the sharp, dry ripping pain going down my groin diagonally and sometimes all the way up over my shoulder. It's honestly some of the worst pain I've ever felt. This went on for two years then they done a laproscopy, hysteroscopy and endometrial biopsy. They found no endo but scarring at the entrance of the left tube, inside the left tube and the left ovary is embedded into the bowel, covered in scar tissue. The can't remove it because it will leave me with a hole in the bowel and most likely needing a bag. I was eventually advised (after a mountain of ineffective treatment options) if I had a live birth I could have a hysterectomy and they would remove everything. Since having my son they have refused. Even my health visitor has tried for me but she can't get anywhere either. They have offered me and external ultrasound for nine months time.

During my pregnancy the ripping pain was gone. It showed up about six weeks post birth again and steadily got worse. I'm roughly six months now and have started the pill again. The same pain is now in exactly the same place on the other side as well as down my left leg and sometimes when I pee (where I imagine my bladder to be). Is this likely to be endo? Can't be a coil because that was removed four years ago. Could it be caused by the pregnancy? Normal birth. Induced but no other interventions. I always said I would never have another coil because there was no way I could live with more of this pain and its really scaring me/getting me down. Thank you for reading and any advice x

Hey,

Really sorry to hear you're suffering! I know how you feel :(

These symptoms definitely sound like they could be cause by endo.

It's common for the symptoms of endo to go into slumber while you're pregnant or breast feeding due to the changes in hormones but recur afterwards.

When you had the Laparoscopy was the surgeon an Endometriosis specialist or general gynaecologist?

Really if your bowel is involved you should be treated and investigated at a BGSE (endo specialist) centre where theres a multi disciplinary team who can operate and offer proper pain management.

Maybe check out the NICE NHS guidelines on the Endometriosis UK site for how to get referred and what you should be asking for!

Got diagnosed last year after about 4 years of issues. still trying to work out the full extent of the disease and looking at my second surgery later this year. Have had the coil for 7 months now and it was HELL.. literal hands and knees on the floor screaming through the pain hell.. for the first 3 to 4 months. I would it now doesnt make any difference to the pain i was feeling prior to the first surgery.

Hope you get some answers and hopefully more helpful doctors!!! Happy to answer any questions you might have x

Really sorry to hear of your issues. Endometriosis pain is horrendous, you have my sympathy.

I wonder if you could afford a private appointment with a consultant gyno? Even if you just went for the initial consultation you may well get more answers and then could take it back to your GP, they may take it more seriously?

I have just had a hysterectomy privately.
I just don't think the NHS are great with women's health.
I would have had to wait for over a year with the NHS and it was only offered after I ended up in hospital as an emergency.

@danielleir thank you so much for your reply. I'm really sorry you are suffering too. It was a general surgeon. I will definitely take a look at those guidelines before asking to speak to my gp again. I just feel a bit embarrassed at this point because I think they are sick of me and nothing useful will be done anyway. Everytime I bother things only get worse but they are slowly getting worse anyway so I really need to try again. Thank you!
@Blackopal I think going private again may be our next step. If I could afford the hysterectomy, I would have done it years ago. Do you mind me asking if you found it helped pain wise?
I totally agree. It angers me to no end what women are expected to put up with just because, thank you for your advice

My situation is different to yours, I had a hysterectomy for very heavy bleeding caused by fibroids.
I didn't know I had endometriosis until the surgeon told me (I had wondered as I used to get shocking sharp pain and my sister has suffered with it for years.).

I am seven weeks post op now and am feeling much better. No pain, no periods is amazing really.

I had a subtotal laparoscopic hysterectomy (kept cervix and ovaries) which cost £6100 privately.
If I had had everything out it would have been nearer 7000. Just giving you those figures as I found it hard to get clear cost advice before I booked.

Thank you. So glad to hear you are feeling better. We have even told around the £6000 Mark too and with me on maternity leave at the minute it's just not possible. Every NHS doctor I speak to says it would leave worse scarring and adhesions so it's nice to hear you have not found this. Possibly something to dicuss privately when back st work. Thsnk you.

The only thing to keep in mind with a hysterectomy is although lots and lots of people feel the benefit from having them, plenty still don't. It is not a cure for Endometriosis. If the cells have travelled and spread to areas like your bowel and/or bladder (or beyond!!!) then a hysterectomy will not treat those cells. Endometriosis tissue actually creates it's own hormones so is not reliant on you having periods to continue progressing.

Definitely try and get a specialist who can really understand the extent if you do have endo so they can be realistic with you about how much a hysterectomy will benefit you. Everybody is different!

I completely know what you mean about feeling embarrassed about going back. I was at the GP so often and told I had IBS, then A&E told me i couldnt walk or talk because of trapped wind. Its easy to feel like it's in your head or your being over dramatic... Even on the week of my surgery i was considering cancelling as i was so anxious they wouldnt find anything and I'd waste their and resource.

But if we dont push for our pain to be taken seriously, it wont be. only you know how much you've suffered. Annoy them if that what it takes to be heard and taken seriously!

If you have any sort of PMI through your or your partners employment you can get initial consultations and treatment for diagnosis through that and then get on the NHS waiting list via a private specialist for the hysterectomy.

Really hope you get some answers and relief - you deserve not to suffer!!!

Agree with PP, you really need to push GPs to be taken seriously.
I went several times re heavy periods. Was told it was normal for my age (38) and basically to get on with.
I went for a private consultation just to be heard and was sent straight from that app to hospital to receive four blood transfusions as an emergency.
Often the private consultant is also the NHS consultant in the local area. Even if you have the intial appointment privately and go back to NHS then i find the GPs are much more reactive when the Consultants name is on the recommendations.

Thank you all again. IBS has come up with me too then dropped after the surgery and they saw what was actually wrong. Definitely all stuff to think about when going forward, thank you again!