1 Year Post Radical Excision Laparoscopy Update

[AnnaMae]

Hello ladies, I had an exploratory laparoscopy in 2015, which confirmed that I had level 4 endometriosis. I am presently 30 years old. Single and no kids yet. During this surgery, two 5 cm cysts were drained from both ovaries. Before then, I was having thigh and back pains and peeing and pooping were excruciatingly painful. Before my diagnosis, my symptoms became worse and I was able to trace it to weight gain of about 4 kg and my soy based diet. I liked soy milk drinks and tofu A LOT. I didn't know they were killing me. I waited on the NHS for 2 years before I had my radical excision surgery. Between this time, I was on Prostab injection for a whole 2 years! After the first 6 months, I was placed on hormone replacement to counter the side effects. My thigh and back pain had disappeared and using the toilet was a lot easier but I still had this pinching/dull stabbing sensation in my vagina/pelvic region.

In April last year, I had a radical excision surgery which lasted about 6 hours. I had fainting spells post op because I was anemic with low blood pressure. Recovery was quite tough. I was bloated and looked pregnant for about 2 months. Pre op, my bowels were involved and I heard my tubes were blocked too. A few months after, I got my periods and it was a bit painful. The third period was excruciatingly painful. I had left the UK and had to fend for myself now. My sister also has endo. She's a doctor and recommended a low dose progestin only pill called Exluton for me. I took it last month and the condition improved by 90%. I had my period in my sleep, without waking up. Sorry to be graphic but I just saw the stains on my pyjamas. This has not happened in over 10 years. I used ibuprofen about twice and I was able to go about my day like a free bird in a blue sky on a sunny day. lol. The flow was a bit heavy but I had my iron supplements ready to fight the anemia. Before my diagnosis in 2015, I used Piroxicam, which is available over the counter in my country, for the pain. My sister has been on Exluton for about 2 years now and she has not experienced any pains. I'll watch out and see how it goes.

I started exercising and it helped a lot but I had an ankle injury which made me stop. I am working on my diet and want to lose 5 kg before the year runs out. I am 65 kg and 5.5". Not actually overweight but I noticed my pain reduces significantly when I lose weight.

Before the year runs out, I will go for another scan and possibly an ovarian reserve test, to help me consider my child bearing options much later.

[Jenifer99]

Hi AnnMae

Just going through your post, sorry got no advice to give but just to let you know your not alone in this journey. Am a Nigeria as well struggling with same issue, never knew endo exist not until early last year when I was diagnosed with one and is like my whole world has come to an end as the Gynacologist listed all forms of issues in my body caused by this evil endo. Did major operation in December to remove extensive endo/cyst/blocked tubes/fibroid/adhensions name it. Now placed on zoladex injection for 3months which’s ended last month so am waiting for my period to regulate itself after which I will self fund for ivf to get my miracle baby that I have been desiring for 3.5yrs now. Best wishes with your studies and hope we all get answers to our questions one day God willing 🙏🏿🙏🏿

[AnnaMae in reply to Jenifer99]

Amen 🙏. I have read on the conception success rate post surgery and it's impressive and reassuring. I'm very optimistic for you. I don't know if this is allowed on this forum but can I ask where you did your surgery in Nigeria and how much it cost? Or did you have it done in the UK too? I have been looking for an endo specialist since I got back to Nigeria. The ones I've seen here are just yarning dust. I'm the one teaching them what to do.

[Jenifer99 in reply to AnnaMae]

Really sad to hear that they got no clue about endo. Yes I had my surgery done here, was referred to NHS by my GP. Really not sure if his an endo specialist but hoping everything goes well as he told my after the surgery that he removed all the endo. I am a British citizen so didn’t have to pay for the surgery but due to my age 37yrs with low ovarian reserve will have to self fund for my ivf at a private hospital. May God grant our desires 🙏🏿🙏🏿🙏🏿

[Jenifer99]

Sometimes I ask my self if am the cause of all this happening to me now. Thinking why I never got married like in my early twenties probably would have had all my children before this evil disease. Now got none and struggling to conceive naturally as my tubes has been affected by evil endo 😢😢😢

[AnnaMae]

We have history of endometriosis in my family. My mum married in her 20s and battled with infertility in the 80s. I heard that when endo is passed on from mother to child, it is more severe with the child. I think I would have had infertility issues too if I settled down much earlier. I would have stayed back in Nigeria with my partner, wondering aimlessly and one unqualified specialist would have been doing a lot of trial and error surgeries on me. My only regrets are that I was ignorant with my diet (soy milk and tofu) and I refused to get on the pill earlier. I have decided to stop beating myself up about it. I have learnt to take challenges as they come without looking back in regret. Depression is one of the major symptoms of endometriosis and the appropriate mindset is important. If you have the means maybe you should consider surrogacy. I have heard of good fertility hospitals in Nigeria who are licensed to do this and I'm sure it would be cheaper than in the UK. I was in communication with a lady who had endo + Adeno and that was what she did. I have heard of some unexpected miracles and I am counting you in. Take care.

[Jenifer99]

Thank you ever so much for this words of encouragement. Yes I would consider surrogacy as my last option but at the moment am thinking because ivf is too expensive to afford here uk looking travelling back to Nigeria to do it as I have spoken to one of the doctors who specialises on ivf in Nigeria at very good price. So am hoping that works for me but otherwise I will inbox you whether you can help me with means to get in touch with how to go about the surrogacy. Please let’s keep in touch if is ok by you start following you on this group 🙏🏿😊