I'm new here, I guess I'm looking for experiences that sound similar to mine and whether it's endo or other ways you got diagnosed. Background:
- From 1st ever period, periods were a nightmare. Flooding, heavy, painful, went on pill aged 14. Stayed constantly on birth control to manage (7 different pills and then depo injection) until last year (aged 27).
- Have always since teenage years had pain on any kind of penetration, some spotting. No sex, no tampons. Was told it was all anxiety, lots of experimental treatments noone could figure out what it was. Gave up on treatment aged 25. Pain miraculously went away when I came off all birth control. Can finally have sex and use tampons.
- Since coming off birth control my periods have been a joy. Much lighter than when I was a teen, 5 days, average pain. Thrilled!
- Admitted a few times to hospital with suspected appendicitis over last 10 years, sharp pain on lower right side exactly where appendix is, not really on ovary, doesn't feel like period cramps, not linked to cycle. Appendix never removed because scans never show it as inflamed. Told it was IBS and do have IBS.
- Had diagnostic laparoscopy for endo in 2011, none found, everything looked totally normal, was told it was in my head and just anxiety about sex.
- 4x4cm cyst found on right ovary after admission and ultrasound in January 2020 but gynae wasn't sure it was the cyst causing pain as when pressing inside vagina where she'd expect pain there was no pain.
- Follow up scan cancelled due to coronavirus. Last week period was 2 weeks late (not pregnant), crazy intense period pain for 30mins that had me on the floor, took codeine, felt better, period normal when it arrived.
- Consultant now thinks I need another laparascopy and thinks the cyst may be endo. One of the suggested treatments might be going back on birth control, which I'm dead against having had no pain-free sex for 15 years!
Has anyone had any similar experiences? Feel like banging my head against a wall that endo is now back on the cards again. Is it possible that it wasn't there 9 years ago after pain but is now?
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frustrated28yo
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Hey, urgh sorry you feel rubbish! I'm not taking from your pain but I will say from my own experience at moment, this whole covid world and unrest in places isn't helping any of us. We are all more stressed than a few months ago, which drains the nervous system, which when all out of whack with pain etc. just heightens the experience.
Re: your question if it was there or not years ago, the only thing that comes to mind is whether the surgeon for first lap didn't know what to look for. If not experienced in endo, with many cases under their belt, they may look only for very obvious and 'older' endo, which presents as dark or red spots, large ovarian cysts or powder burn marks in appearance. It can be causing trouble when a lot 'younger' however and then it isn't as obvious, it can be white or clearer and also hiding in places deep in pelvis that they may not go to with a quick laparoscopy.
So my advice, if going for another lap, make sure it's with someone who knows endo well. Remember, plenty of very good obs & gynaecologists out there, amazing at bringing babies into the world, wonderful surgeons for many things, but endo just isn't one of their specialties.
Thanks so much for replying, it's just nice to know that other people "get" the frustration. The guy that did my laparoscopy the first time 9 years ago is an endo specialist and he seemed pretty adament at the time. I don't know if it can be "dormant" and go though and come back? It's just so frustrating.
Dormant, I don't think so, as it's generally an advancing thing. What can come and go are cysts when fluid or blood filled. I have had a haemorrhagic cyst spotted on a CT scan for my endo on my bowel recently that was 7cm x 6cm x 6cm. On MRI done few weeks later, it was gone down to 1cm!! Likely it ruptured or resolved but I had no major pain when big or when it may have ruptured. What crazy bodies we have
But being told something is in your head, or anxiety about sex, is such a baseless comment. You could have been referred on for something like pelvic physiotherapy for example and not just sent you off home.
Yeah it took 7 years for them to stop telling me it was in my head. It was only when Lidocaine gel meant I didn't have any issues with penetration that they then believed me. Bodies are so odd - it makes no sense that 8 different types of contraception all gave me the exact same symptom of pain on penetration, it's why I'm so reluctant to go back on any if this is actually endo.
Sorry don’t want to jump on post but endo can very much go into remission I had very painful patches which no longer hurt I feel they have gone into remission though it is an advancing disease in scar tissue their can be parts what are active parts that aren’t active but still a specialist should see it even if it wasn’t active as it would show as burn marks or scar tissue also if you don’t want to go on contraception you could try diet changes I have lots of posts on diet and vitamins which may help you especially if you have ibs like symptoms
Actually, I was told he was a specialist in endo but I've just looked up his profile and I'm not so sure. He's actually a specialist in gynae oncology so not endo. Can you ask to change to a specific consultant in the NHS or do you just have to go with who you're given?
Defo do your homework BUT many gynae oncology surgeons do complex advanced endo surgery. I felt same with my current surgeon when he is decribed as specialist gynae cancer and I was newly diagnosed with endo, but was reassured when I learned how many complex endo cases he covers. He has told me some endo surgeries are more complex than many cancer surgeries, it is a benign disease, but acts like a cancer in many ways. But your body and your case is all yours, go with your gut and support around you.
Just wanted to log back on and say thanks for your advice. My local hospital has actually now got an endo specialist clinic (which it didn't have back when I had my last laparoscopy) so I contacted the patient team and asked them to change my consultant to one of them - in case I do need another laparoscopy.
Pelvic ultrasound on Monday so will see how the cyst is looking and whether they think they need to revisit endo as an option.
Unfortunately there is so much going on in the same place that they don’t know what the problem is and how to treat it so they often spend years working through a checklist.
Like you I started on the pill and tried various ones, then had a Mirena coil ( hated that) then had an endometrial ablation which ended the heavy flow but not the pain.
At the same time I was told I had IBS and took various different medications which worked a bit but I continued to be really bloated and have awful diarrhoea around my period.
About a week after my ablation I ended up in hospital with horrendous pain and they were worried it had damaged my womb but seemingly I had a urine infection.
The pain was lower right side and it carried on so I kept going back as I began to worry that I had ovarian cancer due to the other symptoms. Eventually I found a doctor who for the first time ever mentioned Endo and sent me for a scan where they found a cyst on my right ovary and I ended up on an urgent referral to oncology.
It wasn’t cancer but then I ended up on four month watches for a year while the cyst grew, Several came and went on my left ovary and I ended up in hospital with sepsis from a kidney infection.
I was also referred to a bowel specialist and diagnosed with bile acid malabsorption which had led to b12 and vitamin d deficiency and I do feel better on that side of things but still bloated and some diarrhoea.
In January this year I had an mri and they found that my cyst on the right is a large Endometrioma and my Fallopian tube is totally blocked with old blood. I have adenomoysis and the cyst has pulled up part of my bowel and caused bowel loops.
Unfortunately Covid 19 has kicked in but I have been speaking to the endometriosis specialist team and my case has been discussed at an MDT and I am now listed for a total hysterectomy and oophorectomy .
Just keep following what you think is right and keep asking for referrals. It’s really annoying keep ruling things out but I suppose we are lucky that it’s free and we can keep having different procedures. I’m sure reading over people’s post that this won’t be a cure all for me but fingers crossed that we all get a better quality of life xx
I want to hug you when I read this! We have a lot in common in our cases. I too was ill after surgery, I also have bowel loops, had blocked tubes (mine removed), have been taken to MDT meetings and now have further surgery planned. I often push back when people say "You're a warrior", I think, no I'm just like loads of others, but some days I allow myself to think it's true. Hope you are feeling well!
I'm so sorry you've had such a shitty time. Thanks so much for sharing.
I do have IBS (can't eat certain foods, especially peppers weirdly!) but a Thriva bloodtest flagged up really low folate and Vitamin B which has dropped again from a low reading 6 months ago so now got a call with GP to check out. Similar to you I think there's more than one thing going on and it makes it so difficult for them to work out what's going on.
I actually feel relatively well at the moment and fairly symptom free, odd from a lingering RH side pain and bouts of pain occasionally. Anyone else feel like you just cba with the hassle of it all sometimes?
I totally understand your fustration and I feel for you especially because your scans cancelled you always pray a scan will show something or the answers. I've had a low week this week I suffer with adhesions and been on zoladex injections to put me in a false menopause and its failed 😤 endo and adhesions are back obviously a lot deeper than they anticipated when I had surgery in December but it could be that your cyst or something is pressing on nerves maybe... I'd definitely be persistent on chasing appointments etc and making sure your not forgotten so difficult given the covid situation. I am like you too I have my hot water bottle as a permanent fixture and there is naff all on telly! Alls I can say is keep chasing and make them know your name and hopefully they will see to you soon basically let them feel your pain, I was seen a lot sooner and I am glad there was a tangled mass of adhesions. Yes I agree with comments below, make sure it's a specialist who doesn't use you as a trial and error always ask what's their experience of treating endometriosis you are entitled to ask for a different consulsant or specialist who knows more .🤞 you get your answer and they can help you
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